Abemaciclib Verzenio for Stage IV
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good luck! Prayers for many more years. I just started - 3 months. Scans in June.
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Subbing to this thread so I can read it off and on until done. I have been prescribed Verzenio and I'm just waiting now for CVS to have it ready. I'm scared so I need to read others' experience with it.
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scattered energy - Read back on this threadand ask away!
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Has your oncologist suggested anything to help with the fatigue
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Deamo1, I drink a lot of water and take Bio K Plus Probiotics (1/2 the bottle in the morning and 1/2 at night). It has helped immensely. Never experienced any diarrhea or stomach problems. Have been on Verzenio for almost 2 months. Good luck
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Welcome, Going2BeatThis! We're sorry you find yourself here, but we're glad you've joined our community. And thank you so much for sharing your experience with Verzenio! Hearing firsthand from other members can be so helpful.
The Mods
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Please realize that everyone is different. I was petrified to start vercezio. It came with 3 boxes of anti diarrhea meds in the starter kit and that put my over the edge. Guess what? I’m in my 4th month and it’s been very manageable. First month was tough but after that watching my diet; knowing my trigger foods; I’m taking maybe 2-4 immodium a week. You could be same or better or worse. If it’s bad talk to your doctor. The dose can be lowered. Good luck
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Thank you both. I have been quiet for a few days on here, a combo of going back to work and the recovery from that and trying to wrap my mind around my PET scan results. I got them back a week ago and the PET scan shows "Multiple hypermetabolic bone lesions on prior exam have healed, now showing no abnormal uptake." What?!!! Does this mean I'm NED?! I have so many questions. I had an area in the right breast near where my original tumor was that shows "diffuse" uptake and the impression reads that findings "could relate to recurrent malignancy or posttreatment findings" and suggests a correlation with a skin biopsy. The CT portion of the study didn't find a tumor but shows thickened skin.
I was out pulling weeds and left my phone in the house when my doctor called so I missed talking to her about this, dang it! I have a message back in to her office. I don't know. Part of my brain is exploding with joy thinking the Verzenio has worked and my bone mets are gone and at the same time, I keep waiting for the other shoe to drop. Does that even make sense? It's amazing news either way. I will update when I find out for sure what all this means. At the latest I have an appointment on June 1st with my RO to discuss these findings.
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Saw my MO last week. We discussed my fatigue which she believes is attributed primarily to the Verzenio. She is recommending decreasing from 150mg twice a day to 100mg twice a day. Have an MRI and PET scan scheduled for next month. So far my markers are moving drastically in the right direction. Considering that I have only been on Letrozole for 3 1/2 months and Verzenio for 2, I am very happy that my body is responding so well to the protocol. Can’t wait to see if my scans show that the metastasies have shrunk or disappeared.
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Going2BeatThis-sounds like everything pointing positive!!! Let us know. I have been on 100 mg 2x/day for a year after being on 150 for 6 months. Got to be too much when I had to add faslodex and xgeva and switch to exemestane.....but still on it!!!!!
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same protocol and timing as you. Scans in June. Wishing us both luck!
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I've been on Verzenio for 98 weeks. Started out at 150mg, but within short period of time dropped to 100mg due to diarrhea. Scans have remained stable. Was told to follow a low fiber diet to help control diarrhea, plus take Imodium. I followed this diet for 18 months, lost appetite, lost weight, and my albumin and protein levels started to drop. Late January finally changed back to more normal diet with emphasis on protein (meat, poultry, fish), eggs, lactose free diary, whole grains, vegies, fruits nuts, seeds. My diet is now very good, I take imodium 2 mg every other day, and started probiotic. I no longer have diarrhea, but some days have 2-3 formed stools per day. Even with this improved bowel function, my stools are still not normal - they are sometimes pale, and always float. This is not normal. My albumin level remains below normal and I have mild leg edema as a result. B12 was found to be below normal (improved with SL supplement), Vit D level is low normal even on 5000 iu/day. I suspect malabsorption problem. I have mild intermittent stomach pain that I manage with TUMS and Pepcid AC at times. Had endoscopy with normal findings. My oncologist wants me to switch to Ibrance because of the stomach symptoms and low albumin. I'm reluctant due to the neutropenia side effect for Ibrance. I called Lilly Company to ask if Verzenio can cause malabsorption and nutrient deficiency - answer was basically "No". Has anyone else developed nutrient deficiency on Verzenio? Any suggestions?
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Hi Wen,
I'm on 150 mgs in the am/100 mgs in the pm. I vacillate between diarrhea and constipation. I don't think that high fiber is a problem if it is soluble fiber. For example, many on this board and that I know here take Metamucil (psyllium) every day for diarrhea. Oatmeal can also help. Insoluble fiber such as wheat bran or vegetables can cause diarrhea.
My albumin levels are also persistently low. Eating eggs is supposed to help since egg whites are almost pure albumin.
If you haven't been on Ibrance yet, I would suggest the switch. I did well on Ibrance for two years with no noticeable side effects. Verzenio is much harder on the body. Of course, we are all different and our reactions to different treatments can be very different.
Hoping you find the right course.
Hugs, Susan
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hi ladies. I hope you are all doing well. I’m still on Verzenio. Doing good. With the exception of a few bad tummy issues now n then but nothing crazy. I will be going on vacation soon and hope my stomach doesn’t act up. Especially with the food there. My stomach is dec. more sensitive now. I hope you all a beautiful week.
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Susan,
Thank you for your response. I think I'll try metamucil and see if it helps. I'm just blown away by your cancer history, all that you've been through and survived. Helps put my Dx and fears in better perspective.
Wendy
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I have an awkward question regarding bowels/stools, often put into the category of TMI. But it's important to me and I hope someone will answer. My question to those of you who have been on Verzenio for awhile and gained some control of the diarrhea: Do your stools always float, even stools that are solid and formed?
Background: I've been on Verzenio 100mg twice/day almost 2 years now. I followed a low fiber diet for 18 months as advised by my MO team as a way to control the diarrhea. It didn't help much. I also used Imodium. I ended up with low albumin, low protein, low B12. I think these changes may have resulted from the prolonged nutrient deficient diet. For the past 6 months I've been eating a very nutrient rich diet with added probiotics. My B12 improved after starting a SL supplement. But my albumin and protein have not improved. I use Imodium every other day and usually do not have outright diarrhea. So my bowels/stools have normalized to the extent that they are now soft but formed most of the time but they are often bulky, pale or yellowish, and always float. I think this indicates a malabsorption problem (i.e. not absorbing protein and fats) so I've asked my Primary for a GI referral. My question again to those of you who have been on Verzenio for awhile and gained some control of the diarrhea: Do your stools always float, even stools that are formed and solid?
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I think that's a legit question and I wonder if it doesn't present differently for everyone. I think for the most part I tolerated Verzenio well. I do have loose stool occasionally, and mainly in the morning. You are right, that does float and have a yellowish tint. I had always assumed it was from the Verzenio because it started about the same time I started Verzenio a year and a half ago. I was never prescribed a diet change but chose to be more vegetarian and focus on known cancer fighting foods like mushrooms and cruciferous vegetables and added herbs like turmeric and garlic to my cooking. I also added flax seed to fruit smoothies and oatmeal. Because of that reduced animal product focus I add nutritional yeast to most meals, not just because it's good but also a great source of B12.
I can tell you on days that I eat less fiber stool typically does not float but is almost always soft and formed. If I eat too much fat, spice or fiber the bathroom and I are well acquainted. I think so much of it is diet and individual systems. I don't think consulting a GI doc is a bad idea. You might try to find protein foods that your system tolerates. Vital Protiens has collagen supplements that dissolve well in coffee or smoothies. They make vegetarian and fish based versions if your diet doesn't include bovine based products. I use those in my smoothies and focus on fish and beans when I can tolerate them as sources of proteins. The new research on Soy is that it it may even act as an aid to the CD4/6 inhibitors and so I use soy in my diet a lot to as a protein source also. Hope that helps.
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Emac877,
Thank you for your thoughtful and thorough response. I did just add collagen to my daily diet as it's supposed to help heal the GI tract lining. Now I'll take a look at nutritional yeast. Every time I consider adding a supplement to my diet I run it past an oncology pharmacist who looks it up for contraindications and interactions with Verzenio. The pharmacists have been mostly reluctant to "approve" any supplement use, but I think collagen is more of a protein food than a supplement. Thank you again.
Wendy
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hi. I hope everyone is doing well. I’m still on Verzenio , I just had a ct scan yesterday. Fingers crossed I’m stable and I get a bone scan soon. I’m grateful to have made it this far. I’m feeling good these days. Just trying to gain my weight back and hopefully my hair continues to fill in from the radiation some fell. God bless
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in your pocket for the ct results Hopefull. When do you find out?
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thanks Seeq,,, so i just got my results today from the patient portal. I’m super nervous. Everything is normal other than my liver. Shows low density lesions with segment 8 measuring 1.5 cm and .6 cm. In diameter suspected to represent new hepatic metastasis. I can’t stop crying. It’s Saturday so MO not in office.
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Hopfull ‐ I'm so sorry your scan came back with new suspicions in the liver. It's scary news to find out over the weekend without your MO's input. Try not to make yourself too crazy before you can talk to him/her.
I hope there's a benign explanation. I would guess your MO may want to do a biopsy. If not benign, genomic testing of the tumor may provide additional systemic treatment options. Also, you may be able to consider local treatments, since there are only two spots and they are relatively small. There are two threads with discussions about liver mets (How are people with liver mets doing?) and local treatments (Liver mets: resection,ablation, SBRT, y90...anything else?) Both have very knowledgeable people and loads of good information.
Sending cyberhugs your way in the meantime.
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My wife was really getting fatigued from 100mg 2x daily abemaciclib. So, without telling the oncologist, she started taking 2 one day, and 1 the next day. She also started taking Ostarine (enobosarm). Her tumor markers, CEA and CA-15 have now dropped 30 and 40 percent after 2 months + on this new routine. She also feels much better. MRI and CT show stability. The Ostarine is not prescribed, or part of a clinical trial. It was obtained on her own, as a small phase 2 trial showed some prospect of it working for ER/PR + breast cancer patients. Oncologist does not know she is taking this.
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husband. Good news. Hi where do you get the osterine. ?
Looks like my Verzenio might b coming to an end. Since I have the lesions in liver. We are doing a PET scan to be sure. But if it is Mets in liver I will be moving on to Xoleda. But he whats me off Verzenio now, so my counts get good to start xoleda. MO says he thinks the lesions are Mets. Also 3 weeks ago my tumor markers jumped From 50 to 80.
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I'm so sorry, hopfull2. Wishing you better results soon.
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Got the osterine / enobosarm from Science Bio sarms. They impressed me with their third party analysis of every batch. Sarms, being a grey market supplement, have a bad reputation for being either under dosed, or not what they are supposed to be
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Husband 11 - can you only get this in Canada
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I am not on Verzenio but was just reading this thread as I have to constantly manage diarrhea on neratinib. I take immodium/loperamide and sometimes eat a BRAT diet for a couple days. I wanted to tell you, Wen, that my endocrinologist said that chronic diarrhea can indeed cause nutrition problems because of malabsorption. She prescribed sublingual (dissolving) B12 which helped me feel better. I started eating papaya for the digestive enzymes, and real, raw sauerkraut (natural foods store deli section) for the probiotics, and I think they are helping.
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HopeandGratitude: No, we purchased it from a vendor located in the United States.
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Husband11,
Thanks for the info about a source for Ostarine(Enobosarm). I've been wondering how to get it from a reputable source. How did you figure out the dosage? Also, did you get the liquid or the powder?
For those who would like a direct link: https://science.bio/?post_type=&s=ostarine
Hugs, Susan
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