Abemaciclib Verzenio for Stage IV
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Hi I am currently on Verzenio 100 mg and tolerating it well. Back on regular diet very infrequent abdominal cramps and diarrhea. My wbc and neutrophils are low but at level which still allows me to continue with Verzenio. Just found out my provincial government is covering cost of Verzenio but at 3 month intervals so my MO will need to fill out forms to renew. I am curious if anyone has experienced sore throat especially when eating irritants like nuts or chips, and a decrease in gag reflex - I find myself coughing and sputtering especially when drinking liquids and even when on inspiration sputtering on my own saliva. I try to drink very slowly.
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I quit as well.
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Hi NNC,
Interesting that Quebec is covering Verzenio. To the best of my knowledge, BC isn’t yet. I’m getting it through Lilly Plus.
I don’t have a sore throat as such but have ongoing issues with a sore mouth/tongue which seems to get worse with certain foods and drinks. Spicy foods are completely off limits although I really miss Thai food. Coffee seems to be a problem as are certain wines (although I persevere on that front
). At it’s worst it can start to effect my throat and really bothers me at night. My MO gave me a prescription for a steroid rinse which I use very judiciously. It’s a big help. It seems that Verzenio can impact the mucous membranes unfortunately.
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To Sadieservant: Quebec didn't cover Verzenio initially when I was on 200 and 150 mg (my insurance didn't cover it either so Lily was paying for it) so I don't know whether they have recently decided to cover it (as an exception where oncologist makes special request for coverage) or if the lower dosage of 100 mg made the difference.
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Happy Friday everyone. Thinking of you all. Today is a good day. Switched MOs and now getting much better care (avoided hospital stay), reduced verzenio to 100 mg 2x/day so feel like a human being again, my PET scan showed the faslodex and xgeva (at 8 weeks) were having a treatment effect on the bone met and liver mets are still in complete metabolic response, and nothing new!! So, "STABLE", continuing therapy as is, and 3 months of play time until my next PET scan. Gorgeous outside, so time to do some gardening. I wish you all a good weekend and God bless and hold you all in his tender care.
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Hi everyone, I'm new to this site, was diagnosed 5 years with hr+, had bilateral mastectomy, radiation and chemo, was doing ok till.March 12........metastasized to bones, started verzenio and fasolex a little over a month ago, the fatigue and stomach pain knocks me down, couple of weeks ago started running low grade fevers, oncologist wants me to call if 100.3 or higher, has anyone else having this problem????? I'm getting nervous, thanks, a headache accompanies the fever. Thanks so much...
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Hello atall. If you have not been on any aromatase inhibitor and I started Faslodex, you might be having some side effects from the Faslodex. Have you talked to your doctor about these?? Some common ones are
- pain where the medicine was injected;
- headache;
- pain in your arms, legs, feet, or back;
- bone pain, joint pain, muscle pain;
- nausea, vomiting, loss of appetite;
- diarrhea, constipation;
- weakness, feeling tired;
- cough, feeling short of breath;
- hot flashes; or
Also, I am on VERZENIO (In addition you faslodex, exemestane, and xgeva) and have been for about 10 months (Palbociclib before that but hit. ANC too hard). I did not have stomach pain from VERZENIO, I did have the dreaded diarrhea. Mine became unmanageable and before I ended up in the hospital, I ended up dose reducing from the 150 mg twice a day to 100 mg twice a day. My quality of life improved exponentially! Some people will do well after the first couple months on VERZENIO while other people will continue to not tolerated well. You can dose reduce and the doses are still active and in the prescribing label.
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just adding for verzenio, these are side effects from the label as well:
- Nausea
- Abdominal pain
- Infections
- Tiredness
- Low red blood cell counts (anemia)
- Low white blood cell counts (leukopenia)
- Decreased appetite
- Vomiting
- Headache
- Low platelet counts (thrombocytopenia)
- Hair thinning or hair loss (alopecia)
has your MO reviewed these carefully with you? Just saying to call with a fever of 100.3 or more doesn’t seem like your MO is helping you manage side effects??? Of course some people experience 1 or 2 but others more
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me again atall. My apologies as I was rushing to get a response to you and I realize it’s not the most thoughtful response. I wasn’t necessarily questioning your MO, but with the side effects of these drugs, we all need to know what to expect and what not to expect. We also need some help in understanding how to manage side effects. Some side effects are seen early and may lessen with time, others not. Some side effects we can tolerate and some we may not be able to. MBC is a marathon and it’s a trade off on the drugs activity and it’s tolerability. As most MBCIs not curable, we have to seek a decent QOL as well. This forum is good to review if you read back the discussions from several months ago. And I think a thorough discussion with your MO is warranted. Your MO started you on verzenio vs ibrance for a reason? Although essentially the same MOA, the side effect profile is a bit different and one may be more tolerable than another for some people. Something to keep in mind. Wishing you luck and check back in to let us know how you are doing.
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Hi All,
Quick question, have any of you had a resurgence of gut issues several months into treatment? Even on the highest dose I would say that I had it relatively easy in terms of the cramps/diarrhea. On a reduced dose (reductions due to nausea initially then further reduction to to elevated creatinine) I was only having issues occasionally, maybe once every couple of weeks. But recently I seem to be having a lot more frequent trouble with severe cramping and diarrhea several days in a row at times. What the heck? You would think by now my system would have this sorted out.
Anyone else experience this?
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sadiesservant - not sure you saw my post above..I was on the 150 mg 2x/day and "tolerating" it but not with greatest QOL. my body had gotten past the worst of the GI issues but I was taking immodium and lomotil to manage. About 8 months in, suddenly the diarrhea got very bad and nothing worked to stop the uncontrollable diarrhea that hit me every evening. I was maxed on immidium and lomotil and it didn't touch it. I started losing weight rapidly and could not eat from nausea. Mine became unmanageable and before I ended up in the hospital, I took a voluntary drug holiday and dose reduced to 100 mg twice a day. My quality of life improved exponentially. That was early June. I will say its not perfect but I feel human again. Will see what happens in another few months if I am still stable. I know I have pushed it a bit with foods and pay the price, so backing off to foods I know are ok. I know I can only eat small amounts of food at any given time too.
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Of course... I should have remembered that. Funny... I'm about 8 months in as well. How odd... I am not to the point of needing Imodium all the time but have had a few scary moments. It seems that walking can be a trigger. I was out with my dog about a week ago and talk about white knuckles! I didn't know if I would make it home it hit with such ferocity and speed. EEK!
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SS- yes. I understand completely! I was shackled to the toilet from about 5pm to 10 pm almost every night. Horrid. My MO just kept pushing more lomotil and more immodium. I said " no, not working". I now have a new MO. you might want to try lomotil. Helps with cramping and might give you better control.
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Gosh, yes. I'm at month 17. I've been on 100 mg twice/day for about a year; my dose was reduced twice early on due to diarrhea obliterating my QOL. Things got better for a while. Up till a few weeks ago, I was having about one bad day a week, which was tolerable. Now, suddenly it's back every day. I just *expect* diarrhea within an hour of eating. I'll feel a rolling twinge in my belly and then I have about one minute before I get hit with gut-wrenching, crampy, ouchy diarrhea. Can food really go through you THAT fast?
One day last week on the toilet, my mouth began watering profusely and my face turned hot & prickly and suddenly I was vomiting in the trash can. Yay, now this too?
So my MO gave me a script for Ondansetron (Zofran) yesterday.
Well, okay... but I'm beginning to feel like V has *killed* my gut. Zofran won't fix that.
Raw food is a sure trigger, nevertheless I've started juicing some because my body needs nutrition. How can my gut absorb any nutrients when food is sailing right through it at 200 mph?
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Hmm... I hadn’t considered cumulative damage to the gut. That’s a worrisome thought.
I must admit that I have refused to alter my diet. I was overweight for much of my life until I finally got things under control in 1999/2000. The kicker, after spending months working on body image I was then diagnosed with breast cancer, lost part of a breast and was bald from chemotherapy. 🙄 Anyway, I now eat a healthy diet which includes lots of veggies. Okay, perhaps a problem although so far it has been okay. Now?
Lulubee, I had the vomiting thing a couple of times despite the fact that overall I have not been too bad. When it hits though, it’s severe. And the other wrinkle for me is I’m a fainter. It’s hereditary. My grandmother was ridiculous. I typically only pass out when I have trauma or when I am really sick but with warning I can fight it off. With the cramps there have been times when it has been so severe that I have come pretty close including the recent dog walk. That was a pretty tense situation! Seriously considered some bushes but a few too many people in the vicinity. Ha!
Fun times!
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Lulubee and Sadiesservant - my healthy diet is pretty much shot to shit once I went on VERZENIO. I had to spend time figuring out what I could eat that would not destroy my G.I. system. I was huge on salads and fresh fruits and raw veggies. Those are pretty much completely gone from my diet except for very small amounts. I still try to eat healthy and know that anything really fatty is also going to set me off. I eat a lot of meat protein (fish,chicken, some beef, pork) as beans would kill me. I cannot eat broccoli or cauliflower or even a lot of cooked carrots. I can eat string beans but the novelty of them is wearing thin. My taste is also altered, so foods I used to love really do nothing for me anymore. That’s a sad thing. I do use the Orgain organic protein plant-based protein powder. A cancer survivor came up with the formula. I whip that up with some almond milk Or regular milk if dairy is ok, and at least hopefully that gets some nutrients into me that I need. Certainly not the way I like to get my food, which is through unprocessed Whole Foods, but I just can’t do that anymore.
I am so sure when they thought continuous daily dosing of VERZENIO was going to be a good thing for patients and compliance, they didn’t realize our bodies were going to be insulted daily with this drug for (hopefully) a very long time. It’s working for me now so I praise God that it’s actually a drug I’m able to take and that it’s working. It just takes a lot to figure out and once you do figure things out something changes and then that’s out the window. It seems like if we had at least a few days off a month our bodies could adjust a little bit and be ready for the next month. But no one’s wanting to take that chance.
I know when I Was having such wicked diarrhea daily and losing weight that my body was suffering from lack of nutrients. And that’s awful when we have to be as healthy as we can be! When I decided it was either go into the hospital for dehydration and lack of food or take a drug holiday, I opted for the holiday. Within 24 hours my body responded and I felt so great. For 4 days eating and drinking without nausea or diarrhea. So, it gets me wondering on benefits of short drug holidays. Although I know none of us what to go off tmt. But I do wonder.....a good conversation for my MO.
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Hopeandgratitude, I had to chuckle at your comment about beans. Lord no! Spicy foods (I love Thai) is also completely off the table as I have a lot of trouble with my mouth/tongue as well.
Interestingly, I took part in a marketing study which turned out to be for Verzenio. I made a comment when it got to the bit about pushing the "it can be taken every day" angle - why is this a good thing? As a patient, I love the brief periods when I don't have to take drugs. Now that I have gotten up close and personal with Verzenio and all it's lovely side effects I am even more convinced that they should figure out if a patient needs to take it every day not if they can...
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SadiesServant and Hope and Gratitude, I so appreciate your discussion on changing as well as ongoing side side effects! Me too. As more of us are longer term Verzenio users, I'm wondering if we'll be hearing about cumulative side effects. I've been taking it for 24 months, 200mg 2xday, but dropped to 150 mg 3months ago. Diarrhea still, with cramping, etc. Rarely vomiting, but occasionally just as you'd described. The thing that is really kicking my butt is the anemia. Constant hemoglobin about 9.2. Not hideous, but very wearing. Just no energy.
(My name, SchnauzerMom, is now a misnomer. Our beloved Arnie died June 4, a week after his 13th birthday. I am still his mom,though. Best dog I've ever known--so loving and gentle, but a wee bit naughty.)
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I'm sorry to hear about Arnie Schnauzermom. I know how hard it is to lose a beloved friend. You may have guessed but Sadie is my collie. Also somewhat naughty...
I'm amazed that you have been able to stay at such a high dose for so long. My time at 200 mg/ twice a day was very brief. I couldn't cut it. I had no sense of taste, terrible nausea and struggled to even get water down. It was horrific. Worst two weeks of treatment that I have ever experienced. Interesting as well about your hemoglobin. That was one good thing about Verzenio over Ibrance for me - my hemoglobin constantly dropped on Ibrance to the point my MO said STOP.
It seems there is a pattern of worsening side effects. Very interesting. Mind you, my MO and I did have a discussion during my last appointment. I indicated I felt that lower doses might become standard treatment as we learn more about these drugs. He seemed to agree.
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schnauzermom-
So sorry for your loss. My 4 legged furry companions mean the world to me. We have had to say goodby to two in the past. One was definitely my soul dog and recovering from that has taken years!
24 months is awesome!!! 👏 Keep on it, but as Sadie mentions, the lower doses are also active, so don’t fret on lowering a dose. I can’t believe you could tolerate 200 2x/day. I gave it my best shot at 150 mg 2x/day and threw in the towel for dose reduction after 8 months. Palbociclib was easier to tolerate but my ANC just couldn’t recover and I ended up being off more than on. I 🙏 you get many more months or years on verzenio. I pray for 24, but I will take more for sure. My original MO when I lived in PA has a patient who was #1 on the verzenio Ph 3. I think she is 9 years out now and still on it last I heard. There is hope for us all
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I've been on Verzenio since January and have tolerated the 150mg dose BID really well. I have had virtually no GI symptoms at all. Given all the reports I figured I either had no side effects or they were masked by the more pertinent QOL disruptions of the Xgeva and Faslodex. 8 months in I'm now starting to have periods of really bad GI cramping and diarrhea. I have been trying to eat mainly vegetarian with the exception of fish and eggs. It seems like I do well if I stick to the same foods but any variation at all and my system now throws a fit. The hard part is I'm never sure what is going to do it. Last night I made popcorn with some nutritional yeast. I spent the next two hours cold sweating from painful cramps and running back and forth to the bathroom. I've had that reaction when I eat red meat or super fatty meals but I didn't expect it with popcorn. The concept of the drug starting to have a cumulative effect makes a lot of sense to me. Don't know if it's Verzenio or the whole cocktail but I'm now having to keep clear polish on my fingernails to keep them from tearing down to the nub and cracking in half down to the skin in the center. I have my routine follow up with my MO's nurse practitioner tomorrow so I will mention this. SS I hope you can find some relief.
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thanks for sharing eMac877. Certainly something to share with our MOs as they treat more and more patients on verzenio and as hopefully more and more patients are on it longer. I know when it hit me at almost 8 months, none of my labs or chem panel had really changed. The only thing that happened was I started xgeva and faslodex in early April and by end of May, I could no longer tolerate the 150 dose. I chose to take a brief drug holiday as I feared I would end up in the hospital. I wonder the value of drug holidays in order for our bodies to find some sort of return to homeostasis before hitting with the drug again. But choosing when or how long has no scientific basis and some people will fear stopping for any period of time. Until we learn more, I pray I can tolerate this dose and pray I stay stable as long as possible.....praying for all of us
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Thanks HopeandGratitude. I found out today that I have had a progression to my left tibia and right illiac crest. The good news is they aren't painful. I did the bone scan because my right hip has been painful but apparently that area has improved, so it wasn't all bad news. I imagine though that my meds might change. I don't know if my MO will up me to the 200mg dose or try something different. I have xrays tomorrow and then she will get back with me about a plan.
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So sorry to hear about your progression Emac. It's never easy to hear this news. I hope they can make some adjustments in your meds to get it beaten back.
I'm so riddled with bone mets that I find it a bit hard to keep track of. The scans always report stable but then there is mention in the report of someplace they haven't mentioned before. 🙄 Funny you note your right hip. Mine is being a pain, literally! Hoping it's arthritis as I want to squeeze more time out of this combo.
Question for all: Anyone experiencing fatigue from the Verzenio? For the last few weeks I have been sooo tired, struggling to keep my eyes open at times. I thought it was work related but have been on holidays for a week and all I wanted to do was go back to bed today. I kept going but it was a struggle. I found Ibrance a slog but it was very predictable, tied to the cycle. This seems to be yet another cumulative effect.
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Sadiesservant: Yes, I am noticing quite a bit of fatigue. It seems some days I can almost fall asleep sitting up! It seems to have gotten worse with the GI effects I have been noticing which also made me think your theory of cumulative effect made a lot of sense.
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emac877 - have they tried adding xgeva to your regimen? My liver mets are under control (thank you thank you Lord) but then a spinal met popped up on L2. Kept me on verzenio, added faslodex and xgeva. Last scan showed some treatment effect in bone met, Although still uptake by PET and scan was a bit early. MRI shows some tiny bone mets in L1 and L3 that have not changed since March. Too small for PET detection. So, for now they say I am stable.
Sadie’sservant and emac877 - interesting talking about long-term cumulative type of effects. I had a discussion Last week with my “second opinion MO” (original MO) in Pennsylvania. He is at MD Anderson Cooper and treats many patients in verzenio. in discussions he questioned how I was feeling overall and doing with the weather. He tries not to ask leading questions so I wasn’t sure where he was going. Then I thought a moment and let him know that I am not doing so well in the heat. Overall I am ok and can garden and go for walks, but sometimes it feels like my body gets overheated and I come inside and feel very warm, feverish, although I don’t have a fever. He told me he thought that was interesting because now that he’s treated more and more patients he’s getting feedback from patients very similar to that. Wondering if either of you two have felt that and if maybe it’s connected to the fatigue you feeling during the summer? As for my general fatigue, I sleep at least 9 hours a night and I usually try to get a nap in during the day. I am pretty slow with most things these days
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emac877 - I see in the bone mets thread that yes, you are on xgeva......
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HopeandGratitude, thank you so much for responding to my questions, with these fevers they took me off the verzenio and shots and put me on an antibiotic for a week , I was back to feeling myself and actually eating again, been back on the verzenio for a week now, the chronic fatigue, nausea , headaches and today a fever again has returned, they want me to finish this cycle of versenio then I think if my body isn't adjusting they will lower dosage, I'm on 150 mg twice a day, these pills are kicking my butt, they make me feel as bad as when I was on the iv chemo, and my stomach is a mess because I had the whipple surgery 8 years ago for pancreatic cancer, that beast miraculously as not shown its ugly face again but this breast cancer.......ugh..........I will finish this round at this dosage and hopefully my body adjusts , if not hopefully they reduce the dosage and it remains effective......thank you.......take care
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HopeandGratitude - It sounds like we are on the same regimen of Xgeva, Faslodex and Verzenio. I am now waiting for an MRI of the left tibia and am doing my best to be careful with it. I have an appointment on 8/18 and expect to have my dose adjusted or perhaps go with another med. I have done reasonably well with Verzenio although lately I have developed a closer relationship with the restroom. I am not sure what the next step is. The hardest part for me is the waiting, always.
Atall - I am so sorry you are having such a rough time. Sending you virtual hugs and prayers that things stabilize for you and you begin to feel stronger soon.
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emac877 - the waiting is ALWAYS the hardest part...first the test and then the results. I am also on exemestane in addition to the faslodex, xgeva and verzenio. My liver stabilized as a complete metabolic response by PET (Yay! Thank the Lord!!!) when I was on verzenio and letrozole, but then a spinal bone met popped up, which they did not call progression as they thought likely there were some small ones that were already there....but this one started to grow, so they switched me off letrozole and onto exemestane (I am still not quite sure on that one) and added faslodex and xgeva. My last PET was June 9 and then I had an MRI on Jul 14. The met on L2 is behaving as though it is becoming a "treated" bone met, so they have called me "stable". I have 2 tiny potential mets (4-5 mm) on L1 and L3, but they have not changed since March and too small for PET scan detection if they are active. Next PET scan in late September. I pray for stable for a long time. Would be nice to have some peace. This disease just takes over your life - constantly intruding on my thoughts and my activities. I am grateful right now for sure. I know how bad this could be or how advanced this could become, so I say "stable" with a very grateful heart.
BTW, I am doing MUCH better on the 100 mg 2x/day dose. The 150 nearly put me in the hospital about 8 months in, but now I am good most days. Soft stool, but I control anything that starts in with an immodium or two and I am fine for the day. Given that, my appetite is not great and some foods work and some don't. I miss all the healthy stuff I used to eat. But, my GI wouldn't tolerate alot of it now. It's a price, but if this drug keeps me going and let's me live a life with decent QoL (just finished a yoga class - slow flo, but yoga!), it's worth the price!
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