Abemaciclib Verzenio for Stage IV
Comments
-
Hi ChathamLady - I have been on Verzenio for 21 months now. I started it with faslodex shots, switched this past February to exemestane but went back to faslodex because I found the exemestane side effects intolerable. I was declared NED on the Verzenio in May of this year so I am hoping to get a longer run on it.
I can't remember who asked but I have stayed on the 150 mg dose since the beginning. I did not get debilitating diarrhea but have always had a few intermittent bouts. I have noticed the last six months or so I seem to have more sensitive bowels than before Verzenio. It hits a bit more frequently now with very little diet change overall.
0 -
Wonderful news!
0 -
There are several people I want to reply to but will put it all in one response. I have been on verzenio(150 mg 2x a day) Since Oct 2020. Felt Fatigue and Diarrhea at the beginning. Fatigue is gone but Diarrhea is still a problem. I feel like at least once a week it was like a colonoscopy prep...REALLY bad. Even had a few accidents when I couldn't make it to the bathroom. My oncologist prescribed Diphanoxylate 3 pills each is .25 mg. That has been some help. What has surprised me is the hair issue. I thought since I had been on Verzenio for 10 months with no problems I had dodged that bullet. Well just in the last couple of months my hair on the side of my head has gotten kinky (I have really short hair...maybe an inch long on the sides at the most). I also have a patch that is uncomfortable when touched. Now I think I am noticing it slightly falling out. I did not mind being bald at all when I had chemo but the idea of my hair thinning really bothers me...actually more than anything else I have dealt with. Curious if anyone else experienced their hair getting curly before falling out.
Also as far as the alcohol issue. My doc said for me to just live life as normally as possible. I have 2 glasses of wine every night and sometimes 3 at social events. I love to host parties and have 10-20 people over for dinner about 4-6 times a year! I have liver mets. So far the alcohol does not seem to have any negative effects on anything. Actually my liver mets are now undetectable.
0 -
Lori - the hair challenges have been the hardest on me emotionally. I had long curly hair going into cancer. Post taxol I was completely bald. It has grown back curly but since being on Verzenio and hormone therapy I have become very thin at the top and that area grew back straighter, frizzier with more of a wave than a curl. This got significantly worse when I combined Verzenio and exemestane. It's not quite as bad with Verzenio and Faslodex injections. I am accustomed to curly hair and it's challenges but what has been the most difficult is that striaghter, frizzy wave at the top. My sides are as curly as they every were so that has created some interesting styling challenges.
I've spent probably hundreds on various products claiming to reduce frizz or regrow hair. To be honest, I've seen very little difference that any of them have made. I had cut my hair short like yours thinking it would be easier but it's not for me, particularly with the top more straight and frizzy so I am in the arduous process of growing it out. I am taking Viviscal Pro for that because I do seem to notice faster growth on that. End goal is to be able to pull it back in a short pony or top bun and try to hide the thin area.
0 -
Hi all. I've been on Verzenio for 2 weeks now for liver mets (also got Y90 about 3 weeks ago) and I just feel miserable. Intense fatigue, diarrhea, nausea and no appetite. After I eat, I feel worse. My MO is reducing dose to 150 in am and 100 in pm. I still feel like it's too much. I'm getting depressed and feel like I'm stuck between a rock and a hard place. Can anyone tell me "it gets better"? BTW, I've had stage 4 for 13 years and I've been on every drug under the sun...especially for HER2+ targeted drugs. Most recent biopsy showed it changed to HER2-. Thanks for any hope you can offer.
0 -
Loriwithgod -
You give me hope. I just started on Verzenio and can't even walk down the block let alone work out. I'm pretty depressed with my side effects and I'm isolating. I just asked for a dose reduction and even though it's small, thinking it might help? Thanks for your inspiration.
0 -
kaufmanscsi -- I'm sorry that Verzenio has hit so hard. I'm just a couple days behind you (day 14 today). The diarrhea hit about 6 days in and has gotten progressively worse, except for day 10, which was magically totally fine, and I can't figure out what I did differently that day (except that I had taken the Imodium the evening before). Imodium does help me, but I don't want to take it daily and there's still a lot of stomach pain. Perhaps it's unrealistic to try to go through treatment without some daily dose of GI meds. My energy level is lower too, and I'm definitely worried about the school year starting (I'm a teacher and parent of young kids). It's just going to be a much more demanding schedule. Part of me hopes being busy and on a stricter routine will help, but I'm definitely worried about the GI issues hitting at inopportune times. I go in for bloodwork tomorrow. If all is well, I may try to stick it out for a few more weeks before asking for a dose reduction. Let's see what the doctor says. I don't know how I can do this daily. I hope the dose reduction, tho small, makes a difference for you. Please keep us posted.
Loriwithgod -- I only started Verzenio recently, so I haven't experienced the hair thinning yet, but I do remember that same discomfort when my hair fell from chemo. I hope that the hairloss isn't too bothersome, and that the hair regrows. Your photo is stunning; I am sure you look lovely. Don't hesitate to bring up your concerns with the doctor. Maybe s/he can point you to a nutritionist or product that would help too.
0 -
Kaufmanscsi and Star, so sorry to hear about your struggles with Verzenio.... I definitely relate to the teacher worries, Star. I start teaching college clases next week. Fortunately from home....I'd be even more worried if I had to be in person, so I hope you are able to manage. I'm only on day 5, no serious GI issues yet. But, has anyone experienced rashes or hives? Small outbreak on upper chest this morning, itching when I woke up. Seem to be relieved by topical Benadryl but am concerned if they get worse. I stopped taking the probiotic capsule I had started a few days ago to try to ward of diarrhea, to see if that's it. Wondering if I should be calling clinic for so minor a rash or wait and see.
0 -
Thank you. I've been on verzenio for 6 months. Diarrhea under control for the most part with diet but still proactively take immodium if I'm going to out for awhile. Definitely hair thinning. Biotin slowed it down already - also use nioxin shampoo which helps. Growing back but very slowly and like a Brillo pad. If it keeps mt stable though I'll take it! Best of luck to everyone on this drug. Stay strong
0 -
I'm in my 5th week. The diarrhea did get better for me, however, I still have it. I found prescription Lomital to help much better than Immodium especially with the cramping.
The big problem I have with Lomital is that it is a narcotic and it zaps all the energy out of me. And these days I don't have much energy. But, I am able to eat fruits and vegetables with Lomital which I couldnt with Immodium.
The first 3 weeks were unbearable. Even water turned into diarrhea. I was miserable and it was a full time job trying to keep myself hydrated.
The diarrhea would start in the morning shortly after my first dose of Verenzio so I started taking the doses at 12pm and 12am. That way I can go out and get stuff done without having to worry about severe cramping and needing to find a bathroom when I'm away from home.
I also have problems with nausea and vomiting. The vomiting was every night around the same time. Now I'm frequently nauseous but only vomit about 3 times a week.
I feel very weak and am not able to stand for long periods of a time due to severe light headedness. I don't know if it's the Verenzio or tumor load. My oncologist thinks it's because of malnourishment. I could only digest bread and crackers so I have not been sustaining my nutritional needs.
Hope this helps.
0 -
@star2017 misery does actually love company. It helps to hear I'm not alone. I wish you the best with the school year. I only work very part time. I can imagine being worried about the diarrhea in school. I talked to my oncologist who wants me to do 150 in the am and 100 in the pm and if that doesn't work, to go to 100 twice a day. I am leaning toward just jumping right to that. I don't think I can function otherwise. I have lost too much weight and am too fatigued, otherwise. Starting to get depressed and isolated. I took a break last night and this morning from 150 mg and it's amazing how much better I felt today. (it works so quickly) I was able to get dressed, work, eat, and do chores. I am sad to start again tonight. Let's stay in touch.
0 -
Loriwithgod -
I'm glad to hear fatigue improved for you! I know on my last drug, Navelbine, my hair began thinning and it was really upsetting. Yes, I agree, more so than when I lost my hair from chemo (on several occasions). I don't know why that is. I'm sure it will happen to me, too. I took Biotin the last time but not sure it made any impact. Someone told me collagen is good, too? Anyway, sending you positive vibes and hope that you know that you helped me. Thank you.
0 -
Star, Kaufmanscsi and Kabuki, I hope that you are managing with the Verzenio side effects, especially with Star's teaching. I reached the one-week mark and had a bout of the expected diarrhea, plus enhanced nausea, like clock work according to the likely onset of SEs. Two presecription immodium seemed to stop the D, plus I ended up needing a bunch of anti-nausea drugs that day, which seems to have put me at the other end of the lower GI spectrum of problems. We'll see, also haven't been eating a heck of a lot, but try. Also this weird rash at the base of my neck has endured, but that seems to be responding a bit to antihistamines, which is what my ONC recommended. Start the new term Monday, we'll see how it goes.
0 -
Prairiesea, hope the side effects ease up soon. I've had some hectic days so chose to take 1 Imodium pill before breakfast prophylactically. What a difference! I've felt so much better, and may maintain this routine.
0 -
I'm glad you are feeling better, Star!
0 -
Hello
I have just started verzenios and femara due to stage IV, metastatic breast cancer to the bones, lungs, and brain. I'm 47 years old and I feel terrified.
Thank you for posting. Your story gives me hope 🙏🌹
0 -
Hello Loriwithgod,
I also started to experience hair and nail changes after about 15 months on 100 mg Verzenio and Letrozole, and a low fiber diet I had been instructed to follow for diarrhea control, but which was nutrient deficient. I also developed low albumin and low protein levels with lower leg edema. My hair became very dry, kinky, and frizzy on about 1/4 of my head and my nails developed marked ridges, with vertical cracks or splits and one nail became spoon shaped. At 18 months I switched to a high protein nutrient dense diet, no longer low fiber, and started using Imodium more regularly. I'm now at 25 months on Verzenio. I'm taking 1 Imodium every day and 2 on some days. My bowel function has become more normal and my hair and nails have improved. The nail that was spoon shaped is almost back to normal. My leg edema is also getting less. I saw a GI specialist very recently and had a fecal elastase test for malabsorption syndrome due to pancreatic insufficiency. Result was normal. However, I believe I was loosing protein in my loose and frequent stools (the GI doctor dismissed this idea). I believe my high protein diet and better bowel control with Imodium is why I'm seeing improvement in hair, nails, and edema symptoms. My next blood work, including albumin and protein levels, is in about 2 weeks.
0 -
Eftychia - I'm sorry you find yourself in this group no one wants to join, but welcome. You'll probably start to feel a little calmer as you settle into your treatment plan. Hopefully, it won't be too long before follow up scans show proof the treatment is working.
0 -
Eftychia, welcome, but sorry that you have to find yourself here. You will find support and good advice here. You are certainly dealing with a lot! But hopefully, as SeeQ says, the treatment will be effective and you will settle into a routine after awhile. You might want to check out some of the other threads specific to the various mets you have, they are all helpful.
Halfway through week 2 I seem to be managing D fairly well with Metamucil, though it's hard to get the second dose of it in at the end of the day.....I generally take Verzenio around 8 AM and 8 PM, then letrozole 9 PM, and it's difficult anymore to stay up to 11 PM to take a second metamucil. I may try to take it late afternoon two hours BEFORE the verzenio.
My main worries at the moment are rashes at the base of my neck and now my leg. The leg one worried me as I've had several bouts of cellulitis in the last year, and it is warm to the touch. But upping my amount of antihistamine seemed to help....which it probably would not have if the rash were bacterial. However this makes me very sleepy. I'm wondering how long I should try with the antihistamines before I go see someone to take a look. Not sure, either, that it's the Verzenio since I've start other things at the same time to deal with the D, like probiotics and metamucil. First rash started before I took metamucil, so hoping it's not that. But I really want the verzenio to work.....I would hate to have to give up on anther standard first-line treatment so early, just after I had to abandon Ibrance...... Anyway, anyone else experience rashes?
0 -
I didn't get a rash but acne flared up on my face right when I started the Verzenio. I've got it under control now, but I definitely seem to be having more issues than I normally do.
0 -
I have rashes (eczema) infrequently but particularly when I am stressed - and it can be very bad. I was put on a very high dose of reactine 20 mg twice a day (non drowsy anti-histamine) and topical corticosteroid when this happens.
0 -
Thanks for this nnc. Did the eczema seem to be related to Verzenio? I hope the antihistamine worked. Hard to really identify what my rashes are. I've moved from Benadryl (or rather the Walgreens equivalent) to Claritin because I can't afford to be half asleep. The largest rash has shrunk but they are both still there. As long as they don't get bigger I'll wait and see what Onc says next Monday. If they look more worrying I'll go into convenient care and have them make sure this isn't cellulitis instead, though that doesn't usually show up on one's neck.....
0 -
Hard to know if eczema/dermatitis was related/exacerbated by taking Verzenio- my oncologist referred me to a dermatologist - it was everywhere, warm and itchy. It happened the week of a big reunion of 30 years - so I guess I was too excited! Currently on a 1 week break from Verzenio my neutrophils are 0.82 - hopefully they will go back up so I can restart. Unfortunately this happens quite often but I am told the Verzenio stays in your system so taking a week break is okay. And certainly everything is stable so so far so good. I did find out lately I have a rib fracture which is healing that it was due to bone weakening from radiation I had 5 years ago. I swear the more you look into your body the more things you find.
0 -
That sounds rough. I'm glad you were referred to a dermatologist. I might ask for that too. I read back through some of your recent posts on this thread and am very heartened by how well you've done on Verzenio. I hope it continues. Also am hoping it will work for me....just on the second week but so far the diarrhea has been minor, so if I can get past this rash thing I'm rather optimistic. It does seem to have worked for a lot of people's bone mets. Sorry to hear about the rib fracture...those can really hurt.
0 -
Hello, I am new to the forum and wondered if anyone had issues with getting lightheaded and feeling like they would pass out. I have 3x gotten really hot, lightehead and passed out twice. No rhyme or reason. Thanks!
0 -
sammiesunshine - passing out does not sound normal or okay (to my layperson ears) and I would check in with the MO To be safe. Massive, sometimes seemingly unending hot flashes I blame on the AI that I take with the Verzenio.
0 -
sammiesunshine, I never passed out, but I did have that feeling in the first couple of days, immediately after taking Verzenio. It settled after those early days, but I agree that you should let your doctor know.
0 -
I saw my MO today and got my fulvestrant shot. MO thinks that if I need a daily dose of Imodium to get by, then it's worth lowering my dose of Verzenio. We're going to experiment this weekend without the Imodium and then see what the plan is depending on how I react. I appreciate her considering this change if needed.
0 -
Star....glad your MO is thinking about dosing alternatives to daily immodium. I have been somewhat luckier, I think, in that I only had one bout of bad diarrhea. One thing you might consider....after that episode, I started taking metamucil as recommended by several on this thread. I have had some loose stools but no watery D since (sorry, maybe too detailed). I generally take two capsules around midday (2 hours after my last medicine, as suggested by packaging), and 2 capsules at night. No immodium since the 2 that I took after the D episode. The metamucil might be worth a try, but a dosage change also makes sense if you need daily immodium.
0 -
Sammiesunshine...I have occasionally felt a little lightheaded since starting Verzenio, but never to the point of fainting or feeling like I would faint. I agree, I'd definitely notify your doctor about that.
0
