Abemaciclib Verzenio for Stage IV

Grannax2

spicedlife looks like we're neighbors. I live in Garland, just East of Dallas.

I'm not on either of these drugs, just popped in to read what might be next. I'm on Femara/Ibrance for mets in lung , chest and liver. DX one year ago w MBC.

I'm very interested in hearing all about your adventure.

letmywifelive

Has anyone experienced loss of appetite / feeling of fulness with Verzenio?

luce

letmywifelive: yes, i have reduced appetite and get full fast. (the fullness may be from the large malignant effusion in my abdomen and lungs, though.) also persistent low-grade nausea on it, which interferes with my appetite and just makes me feel generally ill. horrid cramping and diarrhea, even on reduced dose. i am in my 4th week.

letmywifelive

Thanks Luce. This started right after she started Verzenio. She has no diarrhea yet however (thankfully) but the lack of appetite is affecting her QOL.She is on her second week. Has your MO suggested anything for symptom management?

luce

letmywifelive: no, he hasn't, but i didn't ask. i am not into throwing more meds into the mix. cannabis would probably help, and it is legal here in oregon, but i don't like cannabis.

Mostcapable

I have not experienced loss of appetite with this drug. I'm starting week 4 of cycle one. I make sure to eat with my meds. I have a full meal and then take meds. Within two hours of the meds I do experience some cramping. It's easier at home because you can do what you need to do to handle gas or bathroom trips. I have not experienced diarrhea. I do eat fermented foods and take probiotics. Aside for a few slip ups, I eat a plant based whole food diet. Just sharing my experience in case it helps

letmywifelive

Thanks Mostcapable, that certainly helps. Specifically, I like the idea about about probiotics.

I see on your profile that you were on Ibrance. Did you start Verzenio after progressing on Ibrance or just switched to it as a more tolerable drug (less neutropenia) ? Are you talking Verzenio with Letrozole?

Mostcapable

I was on ibrance and faslodex in a trial with Gedatolisib. I only got to take ibrance for two weeks or so. They believe my grade 3 skin reaction was from the Gedatolisib. However, they held both meds until it resolved and then I was kicked off the trial because another dose could have been life threatening. So, I never took ibrance long enough to see if it worked. I still have the option to take if I need it.

Yes, I'm taking letrozole with verzenio. Is your wife taking that or faslodex?

letmywifelive

Thanks for sharing Mostcapable. Yes, she is taking it with Faslodex.

Donnabelle

I understand that diarrhea is supposed to calm down after one month on abamaciclib and I am wondering if anyone has had the experience of that actually happening. I have had horrible diarrhea starting on day six and it became more severe during week 3 (although I am wondering if Faslodex injections contributed to that). I also started with nausea during week 3. I have been taking 2mg of Imodium, and lomotil three times a day. I still have several bouts of diarrhea each day, and I have no idea what to eat. I do have an appetite, although mild, but I'm afraid to eat because of the results. Luckily, I am near a bathroom at work and have very understanding co-workers! I am sick of being sick! This morning I managed to get myself out for a walk, only to vomit and have a liquid movement as a reward. Please tell me there is light at the end of the tunnel

---

luce

donnabelle: i am so sorry this is happening to you, i can identify: watery diarrhea since days six. i am in my fourth week now. i was unable to tolerate imodium--it made me feel like i was actually dying, i got so profoundly tired on it--and am now on a reduced dose of abemaciclib but still have diarrhea. unable to leave the house. i, too, am wondering if anyone has experienced a protracted bout like that and then adjusted to the medication. i am familiar with the trial statistics, so don't need to have those repeated.

spicedlife

Ladies, I am so sorry that you are having the horrible side effects. I have not had the diarrhea or vomiting but I definitely have the nausea. Also, I am tired. I am giving up my Monday, Tuesday, and Friday night activities and I haven't been to church since I started the Verzenio.

For me, if I find a solution for a side effect then I don't hesitate to do it or use a drug if it helps. I have great hope from many ladies on BCO that I will return to my former energy level or at least close to it. Right now though, I need to concentrate on going to work so I can keep my job so I can keep insurance so I can afford treatment, etc etc etc.

My sleep is totally screwed up. I might get 6 hours a night in 1 1/2 to 3 hour increments and I need at least 8 hours a night to function well at work. I am hopefull that it will get better.

Okay, now on to what I can share that might be helpful. I keep soda crackers and ginger ale with me at work, in my car, and at home.

Also, in my purse if Im going somewhere. I take Zofran daily in the morning. I don't eat fried food or spicey food or milk . I have IBS so I didn't eat that stuff anyway. I keep candied ginger in my purse and eat that. I also keep queasy drops on hand and I think they really help. I got them with my first Verzenio package and I order them from Amazon. I see a counselor to work on my anxiety/fear that is often at the PTSD level. When I am anxious my stomach knows it even before my brain does.

I also keep tums, prescription Tagamet and alka seltzer on hand and use them accordingly. I don't think i will have to keep doing this but I do right now.

Again, I am so sorry about your horrible side effects and pray that they get better.

Love, Jenny

rpoole1962

Hi Ladies,

Has anyone had thier first scan to see how well this drug works? It may be my next drug and I heard it takes awhile to hit the system.

Thanks, for any information.

Donnabelle

Thank you Jenny for the tips! Sometimes I feel like these side effects go hour by hour, so it is a good idea to have things with you in your purse if you need them. Luckily, I don't have a problem with sleeping, in fact I am sleeping a crazy amount each night, sometimes 10 hours. Despite that, I am often very tired. Luce, I think it's interesting that you feel that immodium could play a role in that but I don't think I can give it up at this point. I'm too afraid of the diarrhea getting out of control. I'm already making so many sacrifices in my schedule and missing out on so much because of the diarrhea

Rpoole, I believe my doctor said that I will have a scan after 8 weeks, so I still have 4 weeks to go.

Donna

luce

yes, thanks, Jenny, for the tips and your kind words.

donna: i am tired all the time anyway (and more so from diarrhea) but imodium knocked me out. i could not tolerate it. so i am trying an abemaciclib dose reduction instead. so far, not much improvement.

spicedlife

Luce and Donabelle,

It's great that they have all these new drugs to fight the cancer but it is seems like they should be able to fix the side effects. I know you already know that but it stinks.

So I wrote about not having an issue with the diarrhea and sure enough today I got in the building to go up the elevator to work and I just started saying oh no, oh no oh no oh no, you have GOT to be kidding me. So I started work later today. I am so grateful that it happened without being in public but I mean I had no indication, no clue, not even a growling stomach or an upset stomach.

So, I spoke to soon, oops.

Hang in there ladies. You have a large community that loves you very much. I am new to the stage 4 stuff but when I was diagnosed in 2012 I could not have made it without these ladies. We have a group of about 40 women and we still stay in touch. We have a private facebook page and they are active in each others lives every day. We have pocket parties when someone has to have a scan or gets any kind of scary news. They were/are closer to me than my family because they understand. We live in 50 different states and one lives in Tobago!

Thanks for letting me ramble.

Jenny

luce

jenny: sorry diarrhea caught up with you, too. yes, i hardy ever get any warning either--while i have painful cramps and rumbling, those don't necessarily occur just before. onset is sudden and violent. i have been housebound since taking abemaciclib, and keep hoping my roommate won't be taking a shower when i need the bathroom. definitely worth trying imodium, and it seems to work for most people. and, hopefully, your period of GI distress will be brief; it seems to go away fairly quickly for most.

JFL

Seriously, I don't know how people work on this drug with the digestive issues. That will be a huge problem for me. You ladies are troopers!

luce

happy to report that today, i have had a semi-formed bowel movement. i reduced the dose of abemaciclib i am on to 150 mg last friday.

still having cramping and mild nausea and such but very much hoping this is the end of watery diarrhea.

if all stays well, i'll keep the dose at 150 mg for another week or so, then try 200mg again to see if my body has adjusted. I am using abemaciclib as monotherapy, so being prescribed a higher dose.

i hope this isn't too delicate a topic for anyone here, but for the last week or two, my stools have been a pale ochre/clay color. i know that that is likely caused by a lack of bile (i have been put off by fatty foods lately) and possibly either associated with abemaciclib or with liver mets (or both), which i may well have by now. has anyone else experienced that, either with abemaciclib or liver mets? i am seeing my oncologist on wednesday so will ask him. it may be that abemaciclib is too hard on my liver. i have been looking a little yellow since taking it.

pleural effusion on top of lung tumors is really messing up my sleep quality, even on supplemental oxygen. if it's not one thing, it's another.

Mostcapable

I'm sorry to those who are experiencing terrible side effects. I do want to provide hope to those who considering taking this drug. I've been on this drug combined with letrozole for almost a month. I have had some cramping and that need to go, however it's completely tolerable for me. I haven't had any diarrhea. I work 6 hours a day, have a 7 year old - I'm running around all day. I haven't had to take Imodium or anything. This is a very tolerable drug so far. I hate to hear that you guys are suffering. I hope it subsides. I also hope that my experience with this drug provide some hope to those of you who are afraid to take it. Now, let's hope it's a successful drug come scan time.

zarovka

Thanks Mostcapable. It is important to understand the whole range of experience on this treatment protocol.

>Z<

Donnabelle

Jenny I am sorry to hear that the Big D caught up with you. I hope it will be brief.

Luce, I have not had the color issue with my stools. I also have liver mets, but everyone is different.

I have actually been feeling a little better. Could they really mean that the 4 week window is true? I am at 4 weeks and the diarrhea has lessened and the cramping has gone away. I still have the diarrhea, but for the past few days it is confined to about a 90 minute time span with several movements, then I feel great for the rest of the day. I am still on the immodium and lomotil, but have not needed the Zofran. Not ready to pop the champagne, but I'm hoping it's headed in the right direction!

Hang in there everyone! Donna

zarovka

Hoping for continued improvement Donna. Keep us posted.

>Z<

luce

diarrhea ceased after two days on the reduced dose and has been absent for third day now. saw my oncologist today. my plan had been to try the original dose again in a week or so, hoping my body would have adjusted by then, since diarrhea seems to mostly be an issue within the first month. he says i can try that but thinks the diarrhea will just return with the higher dose, and that i'll probably need to stay on the reduced dose. the studies are NOT much to go by here since someone with my reaction--watery diarrhea for 2+ weeks straight-- would have been dropped from the study, he told me. so he does not think it likely that my body will eventually adjust to the full dose. i may still try, though, but not persist if the diarrhea returns. he also says that imodium is not an acceptable drug for me if it makes me so tired, since that is too much of a quality of life impairment. i agree.

the GRADE of diarrhea in the stiudies gets determined by the number of bowel movements, by the way. i thought it had something to do with how watery. so, technically, mine would have qualified as grade 3 or even 2, not 4, most days, although it was completely watery.

my stools are still the wrong color, he says either from cancer spread to my liver (haven't had a scan lately) or from abemaciclib. he ran bloodwork. depending on the result, i may need to go off abemaciclib. while it may be low on side effects compared to chemo, this is still a toxic drug, gals.

cure-ious

Luce- regarding stool color, very pale or green stools usually mean a very short transit time in the gut, not time for bile to be incorporated- and more likely to be noticeable after taking imodium, because its compacting what would otherwise be so loose/watery that you wouldn't notice the color...

luce

cure-ious: thanks! i have been hoping that it was caused by diarrhea. definitely noticeable the entire time (and not green), though. let's see if things go back to normal. i haven't had diarrhea in several days, and only took imodium for a day and a half about a week ago.

zarovka

luce - fingers crossed for nothing but good news from here on out. and i like your onc.

>Z<

zarovka

Here is a decent high level summary of the CDK 4/6 inhibitors and how abemaciclib differs from palbo and ribo-ciclib as well as what we know and don't know. If you follow the link to the source in the previous sentence, there are references that will bring you to key trial results. Here is key paragraph, IMO.

Comparing CDK4/6 Inhibitors

ABEMACICLIB, like palbociclib (Ibrance) and ribociclib (Kisqali), which are approved by the U.S. Food and Drug Administration (FDA) in combination with endocrine therapy metastatic breast cancer, is a small-molecule inhibitor of CDK4 and CDK6, which drive the cell cycle. CDK4 and CDK6 phosphorylate the retinoblastoma tumor suppressor protein (Rb), which de-represses the E2F transcription factor, leading to E2F-mediated transcription and cell-cycle progression.2

In preclinical models, abemaciclib had greater affinity for CDK4 than palbociclib and ribociclib,2 which is thought to be more important than CDK6 in breast cancer oncogenesis. Additionally, palbociclib and ribociclib are limited by their pharmacodynamics in their on-target inhibition of CDK6, which is critical for hematopoiesis. As a result, palbociclib and ribociclib require "off weeks" to allow for bone marrow recovery, whereas abemaciclib can be dosed continuously without a break.

This differing dosing schedule may explain response to abemaciclib as a single agent. In the phase II MONARCH 1 trial,3 abemaciclib monotherapy (200 mg orally twice daily) was associated with a 20% response rate, a 42% clinical benefit rate, a 6-month progression-free survival, and an 18-month overall survival, in patients with endocrine-refractory estrogen receptor–positive metastatic breast cancer.

AnimalCrackers

Z - Thanks for the excerpt from the link and the link regarding the triumvirate of cdk 4/6 inhibitors.  There is a chance that my next treatment will be abemaciclib with fulvestrant.  I am currently on a clinical trial for my gene mutation for AKT which has very specific requirements.  I'm hitting a bump in the road with back pain that we are trying to manage with Aleve or OxyContin.  The Aleve is helping with the pain.  I haven't had to use oxy yet and I think I will go to it I remain stable on the trial.  If abemaciclib is not next then it will most likely be xeloda - which I know has been very effective for many of you but I am afraid of the side effects.  

zarovka

My sense is that the doses of Xeloda are much higher than needed to be effective and that's what gives people grief. I am so sorry to hear about the back pain. In addition to the painkillers consider a really expert rolfer/physical therapist of the massage genre and or acupuncture. I would like to see you on that AKT inhibitor forever, with excellent QOL. If not we're here contemplating the differences between grade 2 diarrhea and grade 3 diarrhea any time you need us.

>Z<