Abemaciclib Verzenio for Stage IV
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Threetree - I believe the paper was presented at the conference in San Antonio in June 2021.
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Thanks for this, Goingtobeatthis!
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Yes, I have fatigue from the Verzenio that seems to be getting worse. I’m trying to soldier through it. Any uphill walking makes my muscles scream and I get out of breath. I’m recovering from a broken rib at the moment so haven’t been able to do much. When I recover I plan to get back out there and try to gradually build up my stamina
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Hope Rugo published an analysis from the Monarch 2 and 3 data which showed that dose reductions did not affect overall PFS, and moreover an overall survival benefit could still be observed with those who took dose reduction(s); they stressed that too many were just dropping the drug early without trying a lower dose, and missing out on the potential benefit.
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cure-ious,
What do you know about "circling back" to a previous drug? I was on Verzenio 100mg and letrozole for about 27 months without progression, but with accumulating side effects, especially GI changes that have all since resolved. I then switched to Ibrance and Letrozole and had progression within 3 months. Other than a very early dose deduction for Verzenio from150mg to 100mg, my MO never suggested a further dose reduction and I didn't know enough to ask for one. I've since wondered if retrying Verzenio, with a different hormone choice, would be reasonable option when my current treatment stop working?
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weninwi - I am on my first line of treatment so I am not sure. I think some on our Zoom meeting patcipants have said that if one fails and a second one fails, they don’t try a third one and the same class of drugs nor do they go back to the first one. That being said, if I was in your situation and had good results with the Verzenio, I would strongly advocate to go back on the Verzenio. Not sure if the study indicated that a second dosage reduction to 75mg was showing same positive results but it doesn’t hurt to ask. Good luck!
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Hi WeninWI!!!
Wo, 27 mos!!! I was literally just coming back in here to ask how long anyone here had been on the 100mg or 50 mg dose of Abemaciclib.
So, because Ibrance doesn't work on its own, its reasonable to assume that the letrozole stopped working. The cancer could have also become resistant to Ibrance, but there is no reason to assume it did.
In my case, I had progression on Ibrance-Letrozole, and then moved to Ibrance-Faslodex. After a year and a half on that, I developed terrible foot neuropathy, and was two months on just Faslodex alone then added in Verzenio (50 mg at first, to make sure it wasn't making the neuropathy worse, then moved up to 100mg) at the start of the year.
Are you now on Xeloda? I was just reading that the hand-foot problems can be prevented by taking Celecoxib (a prescription NSAID), which blocks the pathway that causes that, and/or you can take DiClofenac, which is a topical cream of the same drug. Some people are leery of taking Celecoxib because it comes with a warning for heart problems, but the last couple of trials I saw that used it saw no heart problems at all, and my MO says its a great drug, is used for arthritis and joint pain. It also is used to boost the efficacy of immunotherapies like Keytruda, because it helps the immune system function better…
So in short of course it makes sense to try Verzenio-Faslodex combination- and since you have been off of hormonal treatments in theory a FES-PET scan will show how much of the cancer is estrogen-dependent, and then another scan after trying the drug shows if the drugs are working- I'm like a broken record with the FES-PET, its just a different detection agent they use in the PET scan and its been FDA approved now for several years, but I have yet to hear of anybody getting this. Someone said maybe there is only one per lifetime approval from insurance, but you would only need it once, when testing whether the cancer remains ER-dependent…
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WeninWI, OTOH, it might also make sense for you to look for a clinical trial with some new SERD or PROTAC, and those trials may include ribociclib or Verzenio as a partner, and they won't care about your history because you were on Ibrance when letrozole failed…
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Cure-ious - I also have been on Verzenio for 27 months (actually 27 months in a couple of days). 12 @ 150mg and 15 @ 100mg. There was someone in the Monday Zoom meeting that was n it for almost 4 years before she developed a rash and was taken off it.
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Ok, so if I am following this correctly, WeninWi said she was on Ibrance then switched to Verzenio after two months being on Faslodex alone. I was successfully on Ibrance/Femara for four years, then switched to Xeloda, then Afinitor, then Femara alone. Then my onc put me on Verzenio/Faslodex which has been working for one year. I am still stable (NEAD) on Verzenio but am taking a break with for side effects. but am staying on Faslodex alone in the meantime. My onc said Verzenio works similar to Ibrance so a break inbetween them is good. She said it is not usually recommended to be on the same type of drug, (i.e. Ibrance and Verzenio) but she said she has had success with them both after a break. So I am wondering why WeninWi had them back-to-back. I know all oncologists are different and it just confuses the mix. I have no idea whether I am going back on Verzenio yet… I am recovering from pneumonia. I also didn't know there was a 50mg so I will ask about that. We were unsure whether my extreme fatigue and pain were a side effect of Verzenio or the pneumonia or even Faslodex. I see a little trial and error in my future! Anyway, I have been on a lot of different oral combos so I will probably need to go on IV chemo from here. I have had seven years on oral meds so I am thankful.
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intolight & Cure-ious,
Thank you for your thoughts. I was on Verzenio + Letrozole then switched to Ibrance + Letrozole. My MO decided on this switch with the explanation that I would most likely tolerate Ibrance better, which I did. Cure-ious may be right that it was the Letrozole that stopped working. I've wondered why my MO didn't switch me to Ibrance and Femara (fulvestrant) . After Ibrance + Letrozole stopped working I was allowed to progress for 8 months without any changes because my MO wanted a liver tumor big enough for a biopsy. After the biopsy I was switched to Afinitor (everolimus) and Femara (fulvestrant) which didn't work at all. So I don't know. I just know my liver tumors shrank on Verzenio. I'm now on Xeloda only and tumors are stable, but not smaller. My hand foot symptoms are manageable on the Xeloda 7 on/7 off schedule. I now have the ESR1 mutation so Orserdu (elacestrant) may be in my future, but my second opinion Mayo MO says progression free time on average is 4 months - in her words "not a grand slam".
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Has anyone taking Verzenio had to stop because of pneumonitis? I'm starting to wonder if I should reach out to my doctor. I have been dealing with a dry cough and increased fatigue for about a month now and more frequently I feel like my chest is tight. I was on the 150 mg/BID dose of Verzenio for 3.5 years and just reduced to100mg/BID so I expected to have more energy not less. These symptoms aren't awful, but enough to notice. I grew up with asthma and still have seasonal allergies so I'm trying not to jump to the worst possible scenario. I notice it most when I try to lay down or partially recline in a chair. I have sonorous wheezing that starts and at night if I'm on my side I often hear crackles. I do get short of breath but also am out of shape. I have a chest/abdomen/pelvis CT on the 27th and see the PA at my MOs office on the 29th so I'm trying to wait until then. I appreciate any insight here. Thanks.
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EMac, I got pneumonitis when I was on everolimus. It put me in the hospital for five days and i had to be on oxygen and steroids for three months. I would call your oncologist ASAP and not wait. It is better to take care of it before it gets too serious. I was very ill and it tool me a long time to recover. If you don't want to call your oncologist, I would go to an urgent care and let them check you out. At least then you will know.
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Threetree - I took a lot of sick leave in the beginning - working only two hours a day...which seemed like a monumental task, at the time. I retired within a few months. I slept...a lot. And forced myself to eat a few bites at meal time, even though it was the last thing I wanted. I lost a little over 20 lbs within 3 months -- and regained 5 immediately after the dose reduction. I've found the rest since then, lol.
I, too, blame the AI (anastrozole) for the hot flashes. I have some during the day, but nights are the toughest. I run back and forth from cold to hot and sweaty. It sounds counter-intuitive, but I sleep in a cotton t-shirt and cotton Capri yoga pants, and that helps. When I was having more restless nights, I took melatonin, which helped me sleep through the hot flashes and get a good night's sleep. I've figured out I don't want to take it all the time, but I'll keep it in my back pocket for occasional use.
It seems to me there was a study that addressed the efficacy of Verzenio at 100mg, but for the life of me,I can't recall where I saw it (maybe somewhere in this thread).
That brings me to the last and, sometimes, most frustrating side effect of this treatment - the Swiss cheese memory. I don't know if it's the Verzenio, the anastrozole, or the underlying stress, but I'm definitely not as sharp as I was. I have to add that it helps tremendously that I have a loving and supportive husband. He helps keep my S-show moving in the right direction.
All that said, I have no doubt that without treatment, I'd be dead by now. So, I consider myself on borrowed time. I'll take the side effects and get along the best I can.
ETA - I thought I was at the end of the thread, but I see that Cure-ious has added the study information about dose reduction.
Cure-ious- I can't tell you how much I appreciate you sharing your research, here and in other threads.
I've been on Verzenio/anastrozole for 35 mos. It wiped out my liver tumors in 7 1/2. I know 24 mos used to be the average PFS (not sure if it's longer now), but I said from the beginning that I hoped for 5 years on it.
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Emac - Can't believe what you've just written here. Sounds like what I am going through. Dry cough, tight chest, increasing fatigue. I also hear "crackles" sometimes when I am in bed. I thought they were from my degenerated spine (neck vertebra), but also hear them in my chest sometimes. They say Verzenio can cause a cough, so I've just chalked it up to a "routine" side effect. I've also noted that it is spring allergy time and tried to attribute some of this to that. I get a lot of post nasal drip and have thought that might be the cause of the cough. I do think it is the Verzenio causing the fatigue though. I was thinking that maybe I was developing some kind of anemia. My sinuses are worse this year, but I have read that low estrogen (e.g. fulvestrant) can cause an increase in mucus production, so there's that to consider too. I have a tendency to really panic over these things and then run to urgent care or the ER and I'm trying hard not to do that these days. I'm supposed to see the nurse at the onc's office on Wednesday for a blood draw and fulvestrant injection, so will bring this all up then. Gotta say though, that after reading your post and Intolight's, I'm getting scared now.
Intolight - Real sorry to hear about your pneumonitis. Five days in the hospital and 3 months of steroids - yikes! I sure hope you are better now and stay that way. Did your symptoms sound like what Emac and I have described?
Seeq - Yes, it is so hard to tell what is the Verzenio and what is the anti-estrogen drug (fulvestrant in my case now). I've noticed that these sweats really increase now though with any physical activity, so am wondering more now about the Verzenio causing a cough. My heart rate has increased, although it is still within normal range. My "at home" vitals are all still well within normal, but with all this talk above about pneumonitis now, I'm getting worried. Wish I had a very supportive husband like you do. I'm alone and a supportive husband is what I would ask for first if I could have 3 wishes or something. You are really lucky in that regard. Also, I too am appreciative of Cure-ious for posting the study info.
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Hi All. Sorry…I didn't really want to scare anyone, but I did want you to be alert. I figure it is worth getting something checked out instead of letting it get out-of-hand. You know your body and you need to go with what you think best. There are lots of times I let something go for awhile and it resolves fine on its own. I just had a bad lung experience so I guess I am extra sensitive to that. It took three trips to the ER and three subsequent CT scans for my pneumonitis to show badly enough for them to hospitalize me. Looking back, you can see the progression on these three scans. It scared them in the end and although they wouldn't admit it, my pulmonologist alluded to the fact they should have caught it sooner. It was a different onc and a different state even where this happened. I have moved since. My pneumonia (not pneumonitis) now seems to have been cured and my onc caught it quickly before it got too bad. I am feeling a lot better.
Threetree, I also get the hot flashes, cold sweats and extra mucus from the Fulvestrant but like you, I will accept it for more time.
I do apologize if I scared anyone.
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Intolight - I appreciate your input. I have to work over the weekend and your suggestion makes sense, I will send a message through the portal to my PCP just to get her opinion. I'm not overly concerned but this has held on long enough I think it warrants at least an inquiry. Thank you.
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Intolight - No worries about the scare thing. I tend to panic easily over all this stuff, and then when I read that Emac too, seems to have similar symptoms to mine, I thought maybe I should take this all more seriously. Again, I have vowed to "discipline" myself more and stop running to urgent care or ER and try to wait until next scheduled visit to address these things. I had actually told my oncologist about my cough at my last visit, and she thought I was referring to the fulvestrant. She didn't really count anything from the Verzenio, because I had only taken half doses up to then, to see how I would react. She said if I was only taking half doses, I might as well not be taking it at all. I told her that it was my understanding that fulvestrant could also cause a cough and she adamantly stated that "no one gets a cough" from fulvestrant. I told her I'd read it on the official side effects list (up to 34%) and she said that the FDA has to report anything they hear about, but that again "no one gets a cough from fulvestrant." That office also told me that the only things they really thought I should call about were fever, uncontrolled nausea and vomiting, etc. Fatigue and a few crackles in my chest didn't seem to be anything they thought would be urgent.
Emac - I know you have some spine lesions, but do you have any in the front, e.g. sternum, ribs, etc.? I do, and along with thinking that the crackles I hear are from my degenerating neck bones, I've also thought that the ones in my chest might be from my fractured sternum and ribs. I know the crackling sound in bones is referred to as "crepitus", so I looked it up and was surprised to see this article that mentions it in lungs too.
Looks like it can be both bones and lungs. If you hear the crackling in your lungs, it could be something like pneumonia or fluid build up. The scans they did around the end of April where they found my sternum fracture did mention "partially collapsed lungs", but noted no fluid or anything at the time. At my last onc visit, when she told me no one gets a cough from fulvestrant, she did listen to my lungs and said they were clear. Every time someone has listened to my lungs since the fracture was discovered they declare that they are clear. I also haven't had any fever, so I just don't know what to think. I think the cough and fatigue are from Verzenio. I've had tight chest muscles ever since my original mastectomy. PT gave me exercises to loosen the muscles and they helped some, but I stopped doing them when they seemed to aggravate all these new rib and sternum fractures. I chalked the tight muscles up to not doing the stretches I'd done before. I've also thought that a lot of the chest symptoms sounded like heartburn that has come on since the Verzenio and all it's digestive troubles. I'm feeling like if all my home vitals check out OK and I'm not struggling for breath, I might be generally OK. This not knowing what is what is one the things that drives me the most "nuts" about all of this.
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Emac - You sound so calm about all of this in your post. I think I'll follow your lead (smile).
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Its very encouraging how long people have been on Verzenio!!! It has some activity that the other CDK4,6i do not, and some of these extra targets (like CDK9) are implicated in cancer growth (and CDK9 inhibition is a known cause of diarrhea as well).
Going2beatthis- I have also gotten a rash, but mostly causes itching on my forearms, hands, scalp and neck area, and I was able to determine that it is a sun-sensitivity thing, so if I cover up well and wear gloves while gardening, its much better. Wearing sunscreen didn't help but my pharmacist said I needed to use a mineral-based sunscreen (like zinc oxide) which it works very differently in blocking the sun and she thought it would work very well. Its nothing awful that I would have to stop taking the medicine and looks more like psoriasis, but of course, I want it GONE…
WeninWI- and anybody else on Xeloda, it was reported that the prescription NSAID, Celecoxib, prevents or greatly reduces the hand-foot syndrome. At ASCO it was just reported that a cream version of this NSAID called diclofenac does the same, and they called this "practice-changing". Obviously, this is another side effect we would like to be GONE…
Also, I was just reviewing the ADCs with Luce- these are so much better than the traditional chemos that they want to move them up in the schedule of treatments. Enhertu seems to be the best one, the PFS for ER-positive MBC is almost a year (remember, that means half go longer), and altho it is for Her2-low or Her2+ cancers, they get almost the same benefit with Her2-zero (tho I am not clear if insurance allows Her2-zero but there is a test they use for trial eligibility and it allows for VERY LOW Her2). The pharmas are trying to position Enhertu as the first chemo after endocrine treatments, i.e., even ahead of Xeloda, based on the idea that the drugs that work for the longest and for the most people should come earliest in the line-up.
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IntotheLight- I've always assumed when my MO listens to my lungs each month that she's checking for the lung pneumonitis, but is it harder to detect than that?! How long for it to clear out?! All the CDK4,6i come with this risk…
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cure-ious,
Thank you again for all the info. I see that topical diclofenac is available OTC under various brand names - one being Voltarol. I've been following the Enhertu discussion on BCO and the drug side effects for some patients are severe and significant and similarly the drug antidotes given to reduce the side effects. Seems a tough drug.
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cure-ious, I am unsure how easy it is to detect pneumonitis. My onc also checks each time and I assume (dangerous to assume) that if she hears anything she will send me for a CT. My CTs in the ER showed something at the bottom of my lungs and they basically ignored it calling it a little inflamation and was not serious. My onc caught it when she reviewed them and knowing my history, dug deeper and that's when she decided it was pneumonia. I think they call it pneumonitis when it is non-infectious and I think they can tell with a blood test. Perhaps they just have to decide how serious it is.
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The recommendation for Enhertu is to do a CT every 9 weeks to check for pneumonitis - stage 1 is asymptomatic so only discovered by CT- if stage 1- discontinue Enhertu and start steroids- when clears it is ok to restart. Stage 2 or greater- stop Enhertu and treat and never restart. It has been reported to be ~ 3-4% of patients. Most MOs do not do CTs every 9 weeks looking for pneumonitis- except in research centers I think.
I had a cough for about 2 months- many doctors listened to my lungs because I was in the hospital for part of that time - lungs clear- cough persisted- eventually I asked my MO for a CT to rule out pneumonitis- it was not present- received the next Enhertu and cough finally got better.
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@cure-ious , thanks for all your research! I was talking to a friend today and she asked why Verzenio causes diarrhea. I couldn’t tell her. Do you know?
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Threetree - I don't have mets to the sternum or ribs at this point. My known mets are at T7-T8, L2, sacral and right femoral neck and head. They have all been stable for about 2 years now. I think I spent so much of the first year of my diagnosis anxious and worried about every little potential symptom that at this point I have worn myself out with it. I may feel a little more anxious than I project sometimes so I put questions out there to gain insight and that helps calm my nerves also.
cure-ious - I also thank you for sharing your wealth of information. I am always interested in what you have to say.
IntoLight - I use diclofenac (Voltaren) on my feet when my neuropathy gets really painful. I will soak them in warm water and then apply the Voltaren on them and put on a pair of socks. Sometimes that's the only way I can get to sleep when it's bad. I hadn't heard about using Claritin with Fulvestrant for bone stiffness but I am going to try that on my next injection.
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@AJ - don’t know why it causes diarrhea but I am one of those who never experienced it. I do attribute that to the following:
I drink a lot of water when I take it (at least 20 ounces).
I take it after breakfast in the am and around 9 in the pm.
I do not take it with any other meds. I take my Letrozole mid afternoon. Initially I was taking the evening pill at the same time that I took the AI, but discovered that doing so caused me to experience a tingling sensation/numbness in my lower legs. Once I separated the 2 meds, it was no longer an issue.
I use BioK+, a drink that contains a very high count of probiotics. I drink 1/2 in the am and the other half in the pm (before meals).
I am extremely careful about what foods I eat. Although I do eat meat twice a week ( to help with my red blood count and fish or poultry on other days, I eat a lot of fruits and vegetables, gave up diary (use plant based products instead) and stay away from sugar, gluten and foods that turn to sugar.
And lastly, since 81% of people on Verzenio were reported to get diarrhea, that meant that 19% did not. I willed myself and my body to not get it. I was going to be in the 19% (one of my lucky numbers) that did not! I would wake up every morning and say to myself “OK, body, we are NOT going to get diarrhea today.” As crazy as that sounds, I firmly believe that “mind over matter” does work!
Hope some of this helps you!
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Seeq,
Re your comment about "Swiss cheese memory". I have the same affliction, but since I'm in my 70s, I'm not sure if it's from drugs or age. I recently read that a magnesium supplement known as magnesium L-threonate is unique in that it crosses the blood brain barrier, unlike other formulations of magnesium. That's the claim. It also has less of a laxative effect compared to other formulations. Given the known metabolic importance of magnesium, the claim is also made that magnesium L-threonate can improve cognitive function and memory. I've taken magnesium gluconate for night time legs cramps for a long time and it definitely helps, so I decided to change to magnesium L-theonate instead to see if it's as effective for leg cramps and if my Swiss-cheese memory improves. My MO pharmacist says a magnesium supplement is OK. I've only just started so don't know what effect it may have. I did a little comparison shopping and decided on Neuro-Mag by Life Extension available on Amazon. It costs more than my other magnesium supplement, but if it helps with memory, I'd consider it worth it.
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AJ- I do think it is because in addition to CDK4 and CDK6, Verzenio (but not Ibrance or Ribociclib) also leads to fairly good inhibition of CDK9 (CDK9, a major topic studied in my lab, is required for expression of many genes and strongly promotes cancer cell growth).
More direct and potent inhibitors of CDK9 include Dinaciclib: "The most common side effects were diarrhea (87%), fatigue (67%), thrombocytopenia (60%), and nausea (53%), but the treatment was overall well-tolerated…" LOL for a "well-tolerated" treatment that comes with 87% diarrhea and all the other crap; well this is why CDK9 inhibitors have not gone mainstream!!!!
It is thought that the CDK9 inhibition is why Verzenio is stronger than the other CDK4,6i drugs, and is responsible for the anti-cancer activity that Verzenio alone has when given at the high 400mg dose, and also why it comes with diarrhea. At least the diarrhea relects some extra anti-cancer benefit of the drug…
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cure-ious
Thank you for that explanation of Verzenio compared to the other CDK4/6 inhibitors. I understood Verzenio to be a bit different and more effective, but didn't understand why.
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