Has anyone been on Verzenio? (2023)

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Verzenio plus faslodex

Has anyone been on Verzenio and Faslodex together after chemo? The trials were for the combo for patients not yet having chemo with 48 % success or for Verzenio alone for those who had had chemo with 19% success. No explanation as to why combination was not tried for both groups.

Has anyone been on Verzenio? (1)


2 Comments - Posted Jan 03

Diagnosed with stage 2 ductal cancer in 1989 and stage 4 in 2007. This past May 2019 diagnosed with lobular cancer in other breast. I’m having a very hard time with nausea and vomiting on the Verzenio, which I’ve been on since July 2019.Has anyone experienced this?

Has anyone been on Verzenio? (2)


8 Comments - Posted Jan 20

Verzenio Advice Please.

Hi –I am new here and after scouring the internet, I was happy to come across this amazing site.I was recently diagnosed with MBC – mets to bones and liver. ER+, HER2-. I am 48 years old. Have the BRCA2 gene. My recurrence is back after 10 years (which I heard having a long interval can be in my favor). I live in Seattle. My first go about this I did, AC/ Taxol, double mastectomy, radiation, full hysterectomy and then 5 years on Tamoxifin.My Oncologist is recommending Letrazole (which I have already started) Verzenio (based on new positive info/research) plus Zometa infusions every 3 months (already started) Been feeling pretty great for the past 3 weeks on these 2 initial treatments (well besides the stress and anxiety of everything).I am writing today to see if anyone is feeling ok on Verzenio (after the initial diarrhea issues) as I start this coming Friday. Are you able to live a somewhat normal life? I have 2 kids and work so am worried about what my life will look like. I also wanted to see if anyone has been on this for several years with success? I know Verzenio has only been out since 2017 so relatively new. Any positive or success stories welcome. Thanks in advance for any feedback and advice.. xo

Has anyone been on Verzenio? (3)


13 Comments - Posted Feb 21


Has anyone been on this medication? Can you share any experiences or tips & tricks to deal with it?So far, I’ve been on:Ibrance with letrozoleFaslodex aloneAffinitor & exemestane VerzenioXelodaPiqray & Faslodex Possibly other drugs that I’ve forgotten, lol.Not sure yet if there’s been more progression, PET scheduled for tomorrow.My oncologist is paving the way for TALZENNA.I’ve been stage 4 since October 2010, first diagnosed in 2001. Thanks in advance!

Has anyone been on Verzenio? (4)


13 Comments - Posted Aug 26


Hi,I was diagnosed with MBC in June 2015. Stage 1 was diagnosed in January 2009. With ER+ Her-, I have been on many treatments.Doxcil was used for 14 months and just stopped as the two lesions in the spine and a new liver lesion was seen on a PET scan yesterday.The Doxcil never really slowed down progression. Four months ago I had Yttrium 90 treatment on the two liver lesions which wassuccessful. My oncologist wants me to go on Verzenio. Has anyone had success with this drug. My doctor thinks I should start with a low dose 3 tablets every twelve hours instead of the 4 tablets very four hours. With the Covid-19, my doctor thinks a lower dose would besafer at this time. I will be required to go to the hospital twice a month to have blood testing. Verzenio can cause liver problems. I am concerned with the GI problems caused by the drug but Imodium should be useful. I hope that I can hear about experiences with this drug.

Has anyone been on Verzenio? (5)


4 Comments - Posted Apr 04

Metastatic Lobular Breast Cancer

Hi everyone!I was wondering if there has been anyone on here who has had stage 4 invasive lobular carcinoma for a while, or know of anyone who has? My mom was recently diagnosed with bone, cervix, colon and potentially bladder Mets😔 I am very scared and upset. We are trying to stay positive! She is post menopausal started on anastrozole and verzenio. We found out this NYE. Thank you !

Has anyone been on Verzenio? (6)


22 Comments - Posted Mar 11

Hair regrowth on Verzenio?

Has anyone experienced hair regrowth while still on Verzenio? I have been on Verzenio for 7 months and the hair thinning is not stopping at all and pulling me down, as I look like wet cat. Looking for a positive story to hold onto. Anyone? Anyone?

Has anyone been on Verzenio? (7)


9 Comments - Posted Oct 01

Falsodex and Verzenio

Hello fellow warriors, after a year of being stable on Afinitor and arimidex there had been a slight increase in my liver Mets. I have Mets in my lungs as well as a few small ones in a few spots in my bones those have remained stable . My doctor has now put me on Falsodex and Verzenio. Is anyone else on this comb? How have you done? I am only on day 3 of the verzrnio and an already experiencing stomach pain not necessarily nausea or diarrhea . Just would like to hear what other people have experienced! Thanks for any info !

Has anyone been on Verzenio? (8)


8 Comments - Posted Oct 02

Verzenio cognitive side effects?

Has anyone else had cognitive side effects with Verzenio? I’ve been on 50 mg twice a day since January, but lately, I’ve been having lots of brain fog and dizziness. I noticed a handful of strange thinking errors that are reminiscent of the cognitive dysfunction I had before my plum sized brain tumor was removed. Has anyone else noticed similar side effects and how are you coping? The Verzenio is doing a great job of controlling my disease and I’ve even seen some suspicious spots in the brain resolve. I’m reluctant to change treatments, but I also miss feeling clearheaded.

Has anyone been on Verzenio? (9)


1 Comments - Posted Aug 11

Afinitor and Fulvestrant

Dear Community,I am approaching my 4th year since being diagnosed MBC and I just found out that my second treatment has failed. My team has recommended Afinitor and Fulvestrant moving forward. I am HR+ Her2-. I was initially put on Kisqali and Letrozole but after 6 months they pulled me off Kisqali due to a whole body rash. For the last two years I have been on Verzenio and Letrozole which was working until the July PET showed progression. I have felt pretty good! I walk 3-5 miles most days and except for diarrhea from Verzenio I have been feeling ok. The progression came as a surprise...doesn't it always? Does anyone have any experience, insight or advice for what to (possibly) expect with Afinitor/Fulvestrant? My team mentioned that adopting a Keto diet is highly recommended on this combo due to glucose levels that can be affected. Today was the first time that I actually felt angry. Up until now, I've felt EVERYTHING but, anger was not an issue... but today...I'm pissed. The level of frustration just got to me today. I know I'm one of the 'lucky?' ones because I actually feel very good, most days. But this cancer is just doing its thing regardless. Sending positive, healing energy to all of you who are reading this. Does anyone else find Breast Cancer Awareness month...a lot to deal with? Bless all of you and thank you for any wisdom that you feel called to share.Gratitude,Thury

Has anyone been on Verzenio? (10)


17 Comments - Posted Oct 19

Radio Frequency Ablation

Hello ladies!So, I am wanting to know if anyone on here has had Radio Frequency Ablation (RFA) done. I recently received news that some areas on my spine had increased uptake on my PET scan. They are on T4 and T5. My original Mets was T3 and T6, so because of my spinal cord having had 2 sessions of radiation, the treatment team and I decided on RFA and vertebroplasty. I'm set up for next Friday.I had been NED for a little over 2 years. I was on Arimidex, Verzenio and Xgeva. Waiting for the biopsy to know further systemic options. Does anyone have any suggestions? Dr is thinking Faslodex injections. My original cancer and first Mets was HR+/ Her2-. No genetic markers found either.I am so thankful there's nothing else showing up. I don't understand cancer and I totally hate it! Wish no one had to go through any of it! But, I have peace and I know God is good and has a plan!-Vanessa

Has anyone been on Verzenio? (11)


0 Comments - Posted Aug 01


Hi everyone! Hoping for some feedback. Originally diagnosed 2009 stage 2. Metastasized in 2014, chest wall, sternum, rib. Then 2014, some small tumors in liver. Cyberknifed them. Been on EVERYTHING! Ibrance, Affinitor, Verzenio. Now more mets in liver. Tumor markers very high. My Oncologist put me on Kisqali with femera. I am experiencing large painful underskin pimple things on my face. It also itches. Just wondering if anyone else has had this happen? Maybe my dose needs to be lowered. If this pill doesn't work I will be starting chemo. Not sure why we keep trying all the pills when none seem to work. My tumors almost disappeared on chemo in the past. Sometimes I think I should just go on it instead. Any feedback appreciated. Hugs and prayers to all!❤

Has anyone been on Verzenio? (12)


4 Comments - Posted Aug 26

Switching to Verzenio after Ibrance

Hi All,I have been on Ibrance and Letrozole since Sept, 2016 for my ER+ MBC. New scans show mild progression with new lesions on spine. My onc suggested not changing medications for now and continuing to monitor the situation. When time comes, probably in a few months, onc recommends switching to Ibrance and Faslodex. But I am considering changing to VERZENIO with Letrozole just to see if it shakes things up a bit and gives the cancer something new to contend with. My onc indicates this is not contraindicated but not his first choice either as there is no data to support this. Has anyone out there switched from Ibrance to Verzenio after having progression on Ibrance? Was it effective? Side effects? Thoughts? Thanks so much!!

Has anyone been on Verzenio? (13)


14 Comments - Posted Mar 19

Stay on Verzenio, change drugs, or more testing

In early 2013 at age 64 I had stage 2 breast cancer (no cancer in lymph nodes, Oncotype DX 18). I had a single mastectomy and TRAM reconstruction with no issues. My oncologist put me on Anastrozole. In late 2015 my cancer reoccurred in my bones and I had a CA 15-3 of 2400. I had a bone biopsy in my hip and was ER+ PR- HER- like I was when I originally had breast cancer I have receive monthly Zometa since then. I have been through several treatments -- 1. Faslodex shots for 6 months (no improvement), 2. Affinitor/ Aromasin for about 1 year (some improvement which stopped) During this I had radiation on 1 liver and 1 spine tumor because of their size. I had other tumors that were not treated.3. Xeloda for 9 months (my CA 15-3 was as low as 550, oncologist changed medicine at CA 15-3 of 1100) 4. Verzenio/ Letrozole since the end of May 2018. I was off for 3.5 weeks because of low neutrophil. I broke a bone in my had and had titanium permanently put in my hand to stabilize the fracture. My CA 15-3 has increased the entire time I was on Verzenio/ Letrozole with my current CA 15-3 at 2900 - almost as high as ever. My oncologist wants to change me to Gemzar without any testing. My only biopsy since reoccurrence in late 2015 was ER+ PR- HER- . I have had PET scans with the last in April. Should I get a CT or PET to confirm progression? Is there a biopsy or other testing I can have to attempt to determine Gemzar will work? It seems my doctor is just guessing what to do next? My best improvement was on Xeloda. My doctor said he does not want to put me back on Xeloda now. But he may put me on it later. I am now 69 and in good health except for cancer. I have felt very good since early 2016 (after I recovered from hip bone biopsy) except for some minor fatigue.What does anyone recommend? Perhaps another opinion?I appreciate any advice.

Has anyone been on Verzenio? (14)


4 Comments - Posted Sep 23

Arimidex and Verzenio

Hello!Looking to see if anyone else has had blood pressure or blood glucose issues on either one of these drugs. I am just turning 39 and my non-fasting glucose has been inching up over the last month. No family history with diabetes. I haven't had any major food changes or weight changes. I did have another birthday, lol, but I feel as if it's drug related. I need to exercise more and am going to, but I lead a pretty active lifestyle. I have a three year old to chase after! I am about 30 lbs overweight and am determined to lose it now that I am edging towards 40, but I havent had a huge weight gain or such to suddenly have high BP and higher blood glucoses.I have been taking the arimidex for 14 mos. And the Verzenio since November, but had to take a break for a bit to get my liver enzymes normal. Decreased doseage and I have been back on for about 3 weeks.My oncologist has recommended becoming vegan or at minimum vegetarian. (This was Thursday). I plan on researching more, but eaten mainly plant-based since my appointment.Ugggh! It's always something!

Has anyone been on Verzenio? (15)


6 Comments - Posted Jul 08

Any experience with liposomal doxorubicin?

I am stage IV breast cancer with mets to bones, diagnosed 4/16 when I had a pathalogical right femur fracture. I initially had 6 rounds of chemo, then started pill therapy. I've been on Letrozole, Ibrance, Capecitabine and Verzenio/Fulvestrant. In May my PET scan showed progression (slight increase in breast tumor and progression in the bones). I was started on liposomal doxorubicin. My first infusion wasn't too bad, the second made me much more tired with more nausea. The third has been HORRIBLE! I am so tired I can barely function. I have 1 mouth sore that made my entire jaw/sinus, ear throb with pain. That has been controlled little with an antibiotic and Aleve. Not gone, though. The last week I broke out in a very itchy, painful rash. It's on both sides below my butt, a big patch on my right side, and smaller patches just above my hip bones. My hands and feet are peeling and terribly painful. Som days it hurts to walk. Has anyone else had these side effects? How did you deal with them? I'm scared, because I just had a PET scan again this week, and the infusions aren't working. The breast tumor is very slightly larger but a bit more active. Some of the bones are resolving, but others are progressing and there are new ones. My entire skeleton is impacted with mets. I don't want to stay on this infusion, obviously, but I don't know what might be next. Since I have exhausted all the possible pill forms of chemo, I am doomed to infusions from now on. I read in the "Cure" magazine his month about radiopharmaceuticals, and I'm wondering if there is any promise there for me. Anyone with knowledge or experience with those?

Has anyone been on Verzenio? (16)


2 Comments - Posted Aug 22

Has anyone tried abemaciclib (Verzenio) after being off Ibrance or Kisqali

I was on Ibrance/letrozole as my first line treatment for my de novo lobular MBC. I had 42 cycles (June 2015-Aug2018) before significant progression showed up in my abdomen. I’ve also been on Xeloda, an immunotherapy trial, oral SERD trial, and most recently taxol. Due to severe neuropathy I need a break from taxol after 34 weekly doses. My onc is thinking about abemaciclib monotherapy. Has anyone used abemaciclib after a significant time away from one of the other CDK4/6i drugs? Was it as monotherapy or combined with an anti hormonal med? Was it effective? And I have an ESR1 Y537S mutation... does anyone have that, also?

Has anyone been on Verzenio? (17)


6 Comments - Posted Sep 20

Neulasta/filgrastim during CDK 4/6 Inhibitor?

Is anyone having injections to raise their neutrophil levels while on a CDK 4/6 Inhibitor? I had to stop Ibrance due to low neutrophils and now Verzenio is having the same effect on my blood. My docs are fine with giving Neulasta/filgrastim injections for low neutrophils during traditional chemo, but are reluctant to do so for CDK 4/6 inhibitors. Wondering what others' experience has been.

Has anyone been on Verzenio? (18)


6 Comments - Posted Mar 06

Appeal of NJ BCBS denial of PET scan script to monitor response during trea

My breast cancer was discovered in 2009. I did the chemotherapy and radiation. In 2016, lymphedema struck me in one arm and I have been pumping everyday to keep my arm the size it is. In 2020, I was I was diagnosed with metastasized breast cancer. The primary meds I am on are verzenio and letrozole. I cannot do the chemotherapy again. BCBS approved a PET scan in February 2020 after I had a a CT and body scan. My doctor feels that I should have a PET scan every 3 months to determine whether my meds are working so that he knows when I need to switch to something else. Therefore, in May 2020, he requested another PET scan on the basis of monitoring response during treatment; however, NJ BCBS denied. A peer to peer was unfruitful and my subsequent appeal was denied. So far, I found the following. Other patients at my doctors office do not have this issue and some have Aetna while others are on Medicare but no one has BCBS. I can find no guidelines relating to a PET scan for monitoring response during treatment. I contacted Lilly (maker of verzenio) for information on how they monitored the effectiveness of verzenio in their clinical trials (blood tests, PET scans, etc.); but they would only provide such information to doctors. Does anyone have any information and/or similar experiences. Thanks, Pat

Has anyone been on Verzenio? (19)


9 Comments - Posted Feb 20

Verzenio side effects

Hope this Monday finds everyone doing well! I am hoping for some clarity regarding side effects from Verzenio as I am meeting with my oncology team tomorrow to discuss this. (I have been taken off Kisqali because in the third month of treatment, I developed a rash that not only never cleared up but continued to flare up and ultimately spread to over 80% of my body.) Re: Verzinio... I have heard a lot about diarrhea as a side effect from nearly everyone that has mentioned taking this drug. My questions are...does the diarrhea start within an hour of taking Verzenio? Is it triggered by food? Does it last all day? Can you work? Does it eventually go away? UGH...sorry about all the questions. I have also heard that many people needed to lower the dose. My team wants to start me at the full dose and I am not fully trusting that that is a good idea. If anyone reading this has taken a lower dose can you please share how that works? I understand that I am to take 150 mg a day, in two pills each at 75 mg. I know that everyone is different but I really appreciate having as much information as I can from the people who actually know how this drug works! I am also on letrozole and I will continue to take that as well. I am still new to all of this MBC state of being as it hasn't even been a year yet, since I found out that cancer has spread to my bones.Wishing you all a great day.Gratitude and appreciation,Thury

Has anyone been on Verzenio? (20)


4 Comments - Posted Nov 18

Has anyone with stage 4 bc ever come off their meds completely?

Has anybody with stage 4 ER+ breast cancer come off their meds with success? I’m currently on Arimidex and Verzenio and am thinking about sticking with a vegan diet and heavy exercise, similar to Dr. Ruth Heidrich. I was wondering if anybody out there has the guts to do this and if so, how successful is it? I’ve been on these medicines for a little over 3 years.

Has anyone been on Verzenio? (21)


25 Comments - Posted Feb 19

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