Abemaciclib Verzenio for Stage IV
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I had this regularly on letrozole and ibrance. Used topical acne meds! I blamed the letrozole but maybe it was Ibrance.Hasnt happened very much on faslodex/verzenio combination, now on it 7 months.
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Thanks star2017. That's good to hear; I hope the GI side effects continue to be tolerable for you!
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Hi still doing well on Verzenio 100 mg twice a day - 20 months into this treatment. I have blood tests every month, see my oncologist every 2 months and have ct scans and bone scans every 4 months. So far the Verzenio has shrunk the tumour in clavicle area (this is very visible and palpable so is a good indicator of treatment effectiveness that I can monitor), the bone mets seems stable and small in size. I have muscle mini cramps everywhere but most troublesome in abdomen, sporadic diarrhea but definitely manageable and my diet is pretty unrestricted at this point. I was curious if any of you know if there is skin, hair and nail fragileness and dryness, if any changes in perineum skin irritation. Having joint pain which is a mix of age, osteoarthritis and bone cancer and side effects of Verzenio I would think. I have peripheral vascular problems as skin in lower legs are discolored and shiny - don't know if this is effect of previous chemo taxol or Verzenio. Have lymphedema from mass under axilla to right arm so suffering in this heat with having to wear compression sleeve and stockings. I was wondering if any of you are allowed alcohol - I generally do not drink much or may have a drink with friends which of course hasn't happened during covid but my oncologist has said alcohol is not allowed while on Verzenio.
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Prairiesea - the documention says the big D usually starts between day 6 and 8, and mine was right on time. I believe I double dosed immodium (per MO and specialty pharmacy instructions) multiple times in the first few days. Urgency was an issue and was slightly preceded by cramping. Metamucil helped, but don't take it too close to the Verzenio - and it's available in capsules and 'thins' (like a very dry chocolate cookie) without aspartame. The situation improved a little over time. Then, after about a year it got much worse again ( bouts that lasted 3-4 days with immodium not helping much). I requested a dose reduction and it helped tremendously. Prophylactic use of Imodium - the MO recommended it. You can use the liquid form to fine tune your dosage, if you need to (and I wonder if it works faster?). Now, I just take it prohpylactically occasionally (e.g. long car trips) and it works. As others have said, some people don't have any problem, some people have a worse problem. I would advise being prepared for the worst and hope you don't need it.
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nnc - "I was curious if any of you know if there is skin, hair and nail fragileness and dryness, if any changes in perineum skin irritation." Yes, yes, and yes.
I think I've lost 1/2 to 2/3 of my hair and what's left is dry and frazzly. My nails are bad (ridgy and dry), but they do better if I keep them moisturized. I tried the cuticle cream (can't remember the name, except that it has 'hoof' in it), but I couldn't tolerate the cocunut smell. I use Nivea Creme.I blame most of the joint pain on the anastrazole - but I don't see that in your profile.
Re: alcohol - I asked my MO about this, especially with regard to liver mets. He said while some might say no, his approach is to try to maintain quality of life the same as it was as much as possible - so, an occasional beer/wine, or two, is okay. I haven't seen anything that says alochol is contraindicated for Verzenio.
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I started taking Verzenio along with Femara when I was first diagnosed with stage IV in October of 2020, age 55. I was tired at the beginning but feel pretty much myself now. I workout about 2 hours every morning, socialize and host a lot of parties. I poop out at parties earlier than I used to but no big deal. ...speaking of poop...my diarrhea is continuing to be a problem but improving. I have had a few actual accidents not making it to the bathroom, missed some morning engagements because i was not ready to leave the house, and felt fatigued due to water loss. It is really my only symptom of my cancer battle. My Dr prescribed Diphenoxylate for the diarrhea. This has helped a bit but not totally. In general my life is back to normal. Just some loose stools in the morning but improved. The Verzenio and Femara are working remarkably. My cancer markers were cut in half every month and now down to 13. Liver mets are gone and lung and bone mets have shrunk significantly. I don't want to change meds because these seem to be working so well.
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Thanks SeeQ for the helpful reply! I lost all my hair from Taxol treatment and then started Verzenio so hair is sparse and no eyebrows or eyelashes but make-up works wonders on my eyes and wear hats rather than wigs most of the time. I've tried the nail hoof product and CND solar oil nail treatment but my nails are still fragile . I am grateful that I have survived 9 years with metastatic cancer. Verzenio is way better than Taxol regarding quality of life, so as others on this blog have mentioned, I am glad it is keeping the cancer in check and is allowing me to live a fairly "normal" life. I just turned 70 which was a goal I set for myself so now I have to change the marker up to 75!
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Thanks SeeQ.....and Loriwithgod and nnc for your good news, as well as ideas for SEs, about Verzenio. Came at exactly the right time as yesterday I had a flurry of calls from Oral Chemo nurse and pharmacy from whom I'll be getting Verzenio delivered Thursday. By then I'll arm myself with Immodium (I think they send that too, though), metamucil, probiotics and electrolytes and hope that all works. Definitely if this can knock back the cancer that has ravaged my bones I'll be very grateful whatever the SEs...... I'm sure I'll be back for more uplifting moral support, so appreciated. Happy for all of you to hear about your nearly normal lives, that's great.....on to new age goals!
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nnc - yes, while I'm sad to have lost volume in my hair, I'm happy to still have what I do. My eyebrows and lashes also thinned, but a make up pencil fixes that!
Nine years is great - keep that roll going!!0 -
The diarrhea has hit now, but it's manageable (I'm on day 8). I haven't had to take anything, but I feel the stomach discomfort and head to the bathroom just in case. Usually it's a false alarm, but yesterday and today I've had to go twice.
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Hi all,
For those of you taking 150mg who had diarrhea that was manageable with Imodium, did you stick with the 150 or drop the dose in the hopes of reducing the diarrhea and Imodium use?
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Good news. My wife just finished another blood test and all markers continue to improve. Lower liver enzymes, lower tumor markers, and for the first time in years, her hemoglobin is in the normal range. She continues with her unauthorized modification to her prescription by taking Verzenio 150 mg 2x one day, 1X the next, along with exemestane and (unauthorized) enobosarm 9mg daily.
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Husband11 - great news!!
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So happy for you and your wife, Husband11!
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Does anybody have nausea and vomiting with Verzenio? I have had 4 episodes of nausea and vomiting this past week. I'm just finishing up week four. I have some minor abdominal pain on my right side and my oncologist thought that this is diverticulitis. He didn't seem to think that the Verzenio is causing the vomiting.
He thinks that the diarrhea has caused diverticulitis and that I may have to go off the Verzenio for a few days and go to the hospital for antibiotics.
I just started the Verzenio and my liver is covered with mets. Too many to count and the largest is 10 cm. I really don't want to stop treatment. This really sucks.
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Kabuki,
I have never heard of nausea and vomiting with Verzenio but it may be a rare SE. Diverticulitis is easily diagnosed with a colonoscopy. Perhaps you could get a colonoscopy before stopping Verzenio.
Sorry to hear about your liver situation. Any discussion of getting Y90? Maybe the women on the liver thread would have some ideas.
Hugs, Susan
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Thanks for responding, Susan. The Pet scan did show diverticulitis. I think that I have too many mets for Y90.
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My oncologist did say that he could lower the dose or switch to Ibrance but I don't want to do either being only in the 4th week. He did mention that Verenzio has a slight increase of tumor response compared to the other two and that he prefers Verzenio.
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Kabuki,
Did the scan show that you have infected diverticulitis? Uninfected diverticulitis shouldn't be treated with antibiotics. If you do have infected diverticulitis you should take antibiotics ASAP. My Mom almost died from infected diverticulitis and ended up with a colostomy bag for a year.
More hugs, Susan
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Kabuki - I didn't have nausea, but I had strong food aversion and zero appetite (both of which improved over time). I know there have been others in this thread with nausea, and I'm thinking most ended up trying a dose reduction? You might read through some of the earlier pages (a couple references to it on p.59)
I can't remember if I said this before, and I apologize if I'm repeating myself. I started with an MRI showing an 11.8 cm mass and numerous other mets in my liver. My GE said "pretty much the whole liver" but right lobe only. Verzenio got me to NED in 7 1/2 months. Each drug works differently in different people, but that's my experience.
Worth noting - my tumor markers spiked (quadrupled) after a month of treatment and took a 2-3 months to start dropping, but my first follow up PET-CT showed great response.
Re: local treatment, I was not a candidate for microwave ablation due to tumor size. About the time I was pushing harder for y90 consideration, I reached NED.
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Nausea is listed as a side effect of Verzenio. I had mild nausea in the first few days I took it, but it went away on its own. I hope yours eases.
All, the diarrhea has picked up for me. I really don't want to take Imodium every day. Did those of you who experienced diarrhea reduce your dose or just live with it? I'm scared to reduce my dose but feeling pretty weak and miserable from the diarrhea.
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My wife gets nausea from Verzenio. They have her on a drug that she takes from time to time when it happens. I can ask her if you would like.
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Star, I'm really sorry to hear that you are suffering so much from diarrhea. I can't answer your question; I just took my first pill so don't know how it will affect me yet. I hope others do answer. I would just say that a) the nurse who did my teaching-session on Verzenio said definitely let them know if I was having to take immodium all the time (like toward the 8 maxiumum of the prescription dosage), they would want to consider a dosage change then and b) there are a number of other recommendations in this thread to try, both in the header original post and from other participants in the thread, like metamucil, which seems to work better for some than immodium, probiotics, electrolytes to improve your needed minerals while you have diarrhea. I'm planning to stock up on all of these today. Might be worth a try and make you feel better and be able to take less immodium? I do hope it gets better.
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Kabuki, I'm no longer on Verzenio but had terrible nausea when I first started, to the point that I was finding it impossible to eat or drink anything. I did vomit once or twice as well. I was on the highest dose so had a dose reduction which took care of it. I knew there was no way I would be able to carry on if I stuck with the full dose since it's not like chemo where you at least get a break between cycles. (I was part of a marketing research survey for Verzenio before it came out and laughed at their promotion of the fact that you could take it every day. Not sure why that is a plus!)
Star, don't be afraid of dose reductions. I had several and got 15 months out of Verzenio/Faslodex after being on Faslodex alone for almost two years. In my case it was the nausea and then my creatinine levels started going up too much. The doses they set are based on the maximum that patients can tolerate often and not the dose required to control the disease. Bestbird has recently been involved in a study about this. Physicians have a tendency to start at the strongest dose which may not be required for efficacy or the best from a patient quality of life perspective.
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Thanks, all. Today's been better so hoping I can manage. My mo is usually very responsive but hasn't responded to my questions about my side effects. I know she's out of town next week (and maybe this week too), but I figured someone from her team would check in. They are usually very quick to reply. I'll give them a call today with an update and ask for recommendations, since we're going into a weekend.
Not sure why today is better, but I was more deliberate today about taking this on an empty stomach and waiting at least n hour to eat. Maybe that's helped.
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That is great news Husband.
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I’m sure it’s been asked and answered before but I haven’t had any luck searching so please forgive me for asking again
how long have you been on / we’re on Verzenio before it failed you?
What was next.
I’ve been on it 6 mos. 150 mg 2x a day. Managing the side effects.
Thanks in advance
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Hi Chatham, as I mentioned above, 15 months for me but I was heavily pretreated on hormone related treatments. I know there are others who got much more time.
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Thank you for quick reply. Prayers for you!
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Thank you all for your responses. The nausea and light headedness were so bad the past 2 days that I could only lay on the couch. Even reading gave me headaches. I may ask for a dose reduction. I am only hesitant bacause of the extensive liver mets. I get my first scan in 2 weeks so I think that I will hold off.
SusaninSF, The Cat scan showed diverticulitis but it did not elaberate as to where it was located. I have not had a fever and just mild abdominal pain. The pain was the only symptom. My oncologist said to watch for a fever. I guess a fever would be a tell tale sign of infection. I never had intestinal problems before this.
It does seem like I have more nausea and vomiting than the average patient taking Verzenio. I have always been very sensitive to meds and usually function on the lowest dose. Nausea and Vomiting is a common side effect for me. I cannot handle any of the opiate family meds. Even vicodin and codeine will make me severely nauseous.
As for Y90, I am newly diagnosed (4 weeks ago) with extensive liver mets so I think that Verenzio is the first protocol treatment. Dr Melisko did say that treatments would pretty much be the same wherever I go as oncologists all pretty much follow the same protocol.
Husband 11, Yes, I would be interested in what your wife takes for nausea. Thank you. I take Zofran. It works about 50 percent of the time.
SeeQ, I am so happy for you that you were able to acheive NED with Verenzio. You give me hope. May you have many more years!
Sadiesservant, That commercial is weird. Unlike the others you can take Verenzio every day! Yep, just what we want....more pills to take. Non of the Verenzio commercials show the actors running for the toilet. Now that would be more realistic.
The 2020 commercial is better. It states that Verenzio is the only one of its kind that helps you live significantly longer when taken with fulvestrant. So it's claiming that it's superior when compared to the other two on overall survival.
Star2017, After 4 weeks the diarrhea is not as severe but I still have problems with it. My oncologist has prescribed Lomital which works but is the opposite end of the spectrum as it will constipate me for 2 days.
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