Stage III and Verzenio
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I'm curious if others have experienced low blood counts or if it was just me..
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after over a year on Verzenio, they are lowering my dose. I'm on pause while they work out prior authorization and I am not missing it!
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Just checking in here. I'm still on my 150 mg 2X a day dose. I just had tumor marker testing done for the second time since I started Verzenio and my numbers are going down!! Woohoo! I go to see my onc again tomorrow and before my bloodwork came back, I was ready to ask for a dose reduction. THIS has given me the ooompf to continue on at the 150 mg. I know that they aren't completely accurate (tumor marker tests) and not every doctor even does the tumor markers, but to see it actually making those marker numbers go down was the best thing and I really needed a positive right now. I have a very high chance of reoccurrence due to the amount of positive lymph nodes alone.
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kotchaj - congratulations!
I'm a month into 150 mg Verzenio. Started diarrhea on day 5 which was quashed with Imodium. But on day 8, diarrhea led to me fainting and I went into er. It turns out I had a fainting episode which I've never had. After a 5 day pause, I went back on 150 mg Verzenio. This time I changed my diet from primarily protein and raw fruits/ veggies to more carbs/ pasta etc. so far, the diarrhea completely disappeared without the need the
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Hi bong,
Wow! Diet did a wonders for you. I can only imagine how scary that fainting episode must have been for you. I can't eat salads and raw veggies. I do okay on fruits as long as it's not apple. I am taking Lomotil with my Verzenio and that seems to work quite well for me now. My Onc's PA made me pinky swear I would try it for a month. I hate taking anymore meds than I already am so even meds that help make me shake my head no. Not smart of me and I'm stubborn.
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Hello,
At my most recent check-in with my onco, I asked about Verzenio because I seem perfect for it (how lucky!). He told me that it's too late for me to start it, that usually one starts right when going on the AI. Has anyone else been told that? It seems like many of you were started on it well after your surgeries and any radiation. I finished rads in January 2020, and have been on the AI since then.
Thanks for any relevant info anyone can share!
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further update. Diarrhea came back which I decided to avoid in advance with Imodium. Basically I take one Imodium daily unless I have no bowel movement. If bowel movement resembles diarrhea, I go for two Imodium pills. It has worked so far. No more diarrhea.
The bad news is that three months into Verzenio, I have anemia ( not super serious), low wbc and v low lymphocytes. The lymphocytes is about .14 and normal is at least 1.00. They were at .5 from radiation and now way down. Hoping they revert back up.
Still being kept at 150 mg twice daily dose for now.
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further update. Diarrhea came back which I decided to avoid in advance with Imodium. Basically I take one Imodium daily unless I have no bowel movement. If bowel movement resembles diarrhea, I go for two Imodium pills. It has worked so far. No more diarrhea.
The bad news is that three months into Verzenio, I have anemia ( not super serious), low wbc and v low lymphocytes. The lymphocytes is about .14 and normal is at least 1.00. They were at .5 from radiation and now way down. Hoping they revert back up.
Still being kept at 150 mg twice daily dose for now.
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Hi candilea,
I’ve just moved back to the U.S. after many years in New Zealand where verzenio is not available. I am about 4.5 years out from diagnosis. My new onco prescribed it when I asked about it,but she did say there is no evidence that it will be effective this far out from active treatment. She left it up to me, but said she would probably try it if she was in my shoes.
I feel quite mixed about it to be honest. In the first few years I would have done anything to reduce the risk of recurrence. I even joined the MonarchE trial to try to get verzenio but then ended up in the placebo group. To my surprise I haven’t thought much about cancer over the past couple of years and was enjoying that… I’m also not excited at the prospect of a bunch of new side effects, but I will probably give it a go. I would push your onco or maybe see if you can see someone else? The results are pretty amazing so far. Good luck!
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Hi beeline, I am way behind on recent studies. I remember reading two or three years ago, adding Verzenio or similar inhibitor to the treatment protocol of high risk non- metastatic patients resulted in some reduction of relapses during the first four or five years but not beyond. There was not enough data to even assess whether it offered some benefit beyond five years. What are the most recent findings?
Also, have you or anyone reading this thread considered dna blood test to help decide?
Best to al
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Hi muska,
No you are exactly right. They just released the 4 year results at SABCS in December. The good news is that the benefit of adding verzenio seems to be increasing from year to year compared to hormone therapy only, but no one knows how long that will last or if it will make an differenc starting 4 years out (or more). So far none of the other cdk4/6 inhibitors have shown an impact in early bc.
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Has anyone quit Verzenio before the end of2 year course? I’m only on month 3 at 100mg and really struggling with feeling super low energy. I am anemic now, too, and get out of breath just walking up the stairs in my house. I can’t see how I can manage the next 2 years like this — I have a full time job, 2 school aged kids and can barely drag myself out of bed most days. I want to give myself the best chance at reducing the risk of recurrence, but there’s also no evidence verzenio will even help since I started it 4.5 years out from surgery. Any thoughts or input appreciated!
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Hi beeline,
I just wanted to say I understand how tough it can be! I have three kids and work full time. I've been on verzenio for 16 months now. The first 4 months or so we're the worst for me, but it did get better. I still have a lot of fatigue though. Check with your doctor about taking vitamins.... I take Flintstones chewable vitamins with iron and B12. It seems to have improved my anemia. But, I do still feel tired a lot. Just counting down the months until the end!
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Hi Beeline,
Try and stay the course just one more month. Divergent is right it does get better after the 4th month. I'm on month 13 and I am no longer going home at lunch from work and taking a nap. It takes some time for your body to adjust and for you to figure out what works best for you. Keep pushing through. Its not easy by any means for most. And as far as you being out, there have been so many people who have seen tumors shrink, markers go down, all kinds of positives being on it. With that said, you also need to do what is right for you. I want any chance I can get to kill or keep the cancer beast at bay.
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I am currently battling a recurrence. Was first diagnosed in Sept. of 2015. Most recent recurrence in Aug of 2022. Finished chemo on 12/30/22. Had surgery on 1/31/23. I am currently getting radiation therapy. As soon as I am done with radiation my oncologist is starting me on AI with Verzenio. I have been getting so nervous about taking this drug. First of all I was worried about the cost. But yesterday I was able to confirm my insurance coverage as well as apply for copay assistance. I just don't understand our healthcare system that can justify charging so much for a potentially life saving drug. But now I am still worried after reading this thread about the side effects. I get that almost everyone has the Big D with this drug. And I have seen others say their blood counts go down. Anyone else have any of the more serious side effects? I seem to always get side effects from all the drugs I have taken. I have just started getting my hair back and don't want to lose it again either.
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I was in the MonarchE trial for Verzenio randomized into the drug arm and finished my 2 years in January 2021. Unfortunately contracted COVID 3 weeks before my last dose and was hospitalized for 6 days, so didn't get to celebrate the last dose since I was still recovering.
Beeline, I concur with kotchaj and divergent, the first 3-4 months were the most difficult with the side effects (fatigue and the Big D) but did get gradually better after that. I was travelling quite a bit for work at the time, and was worried constantly about being able to get to the bathroom. Fortunately, never had an "accident" and the urgency declined and the D seemed better controlled after about 6 months. I think that contributed a great deal to the fatigue, as I constantly felt dehydrated no matter how much water I drank. I also learned what foods were more likely to cause problems and was very deliberate in avoiding them or knowing I'd need to have access to a bathroom.
mvspaudling, my blood counts were down the whole time I was on Verzenio and I know my serious bout with COVID was because my immunity was compromised (vaccine wasn't widely available until just after I had contracted it). Blood counts came back up pretty quickly after I completed the 2 years. I did not have hair thinning and any other side effect was pretty minor. I was pretty sure I could handle two years, even when the side effects were at their worst, and I was able to stay at the 150 mg twice a day for the entire 2 years. Maybe the fatigue wasn't as noticeable for me because I was just tired through all of 2018 during treatment and moved right into the fatigue from Arimidex & Verzenio
Best of luck to both of you! You always have to weigh treatment versus quality of life. If the side effects make your QOL miserable, then it's not worth it as no treatment at this point is a guarantee.
Kim
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Thank you everyone for the encouragement and support! It looks like my previous reply disappeared somehow, but I ended up taking a break of about 10 days as my heart rate shot up and I was getting dizzy and winded just walking up the stairs in my house. I felt much better after a few days off and my blood work was all back in normal range at the end of the 10 days. Now I am back on 100mg twice a day and hoping my body tolerates it better.
For others just starting out or soon to be, I wanted to share that I have had minimal GI issues and almost no diarrhea so your experience on that front may vary
Good luck to all and thanks again!
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Thank you all for the feedback to my question about starting Verzenio when already a few years out of treatment...I still haven't been put on it, but frankly, forgot to even ask my oncologist about at my most recent checkup (a week ago).
I did find out, though, that at my next checkup in 6 months, I will have the Signatera test that looks for tumor DNA in the blood. I suppose, that could alter my path, depending.
Beeline, I'm happy to hear that the effects are leveling out for you!
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Hello, everyone! I have just started Verzenio on Tuesday (so two days only). I am awaiting the beginning of dia. It looks like almost everyone gets it. I am a college teacher. I don’t know how I am going to excuse myself in the middle of class and run to the bathroom. I am very worried
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Hi windwalker27, that sounds like it could be tough to leave the class....if you are comfortable with this, maybe you could just share some vague details? Such as saying that you are on a new medication and may need to have a 5 min break occasionally? Or maybe try to shorten the length of any lectures and have the students do group work (my kids grade school teachers do this all the time)? Or use short videos during class to give yourself time for breaks?
The D should get better over time. Now, I tend to have it shortly after I eat something so I try to schedule things around that. Also, imodium really helps me so I have to stay on top of it and make a I take it before symptom start. But, don't start taking it until you need it at first otherwise you might get constipated! It'll probably take some time for you to work out how much you need and how often.
Good luck!
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Thank you, divergent, for your advice. I guess I have to be creative. It is too early to say how bad it’s going to be. It’s only my fourth day taking Verzenio. It looks like the side effects start at least after a week for most people
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First post here. Did any of you get an Oncoscore done? I realize that for Stage IIIA use of the Oncoscore is relatively recent following the RX Ponder trial. I would qualify for Verzenio under the protocol of the MonarcheE study, 6cm. tumor but just one node with micromets. But I got a 17 Oncoscore which puts me in the low risk of recurrence category for postmenopausal women.
I discussed this with my oncologist and he said that for the potential side effects, the fact that micromets were not separately categorized in the Monarche study and the low percentage of additional prevention, that I could skip Verzenio.
I am still struggling with this decision and now I see a similar effect for Kisqali with seemingly fewer side effects.
I am doing so well one year out on Anastrazole. I wonder what other oncologists are doing in this situation?
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Hi all! We're bumping this discussion, so hopefully @tnsplayer gets some responses to her question.
Thanks for your help!
The Mods
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Thanks, mods. I have continued to research this. 95% of the women in the Monarche study had chemotherapy (probably since the study began before the RXPonder results were published). 60% of the women had 4 to 9 nodes. I did find one subsequent look at the subgroups which found that in postmenopausal women there was not as much of a difference in the Verzenio plus ET arm as the ET alone arm.
I'm no statistician but looking at the chart it appears that in women over 65, the difference was 4.1% versus 4.8%.
For women with one node the difference was 2.7% versus 4%.
For tumors >5cm. the difference was 4.9% versus 6.2%.
I know there are some math whizzes on this board. Anyone else figured all this out?
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HI tnsplayer,
No Oncoscore done on me. I'm 3C with 20/21 nodes positive. I've been on V 17 months and will continue for the two years. I read the Monarch E study and was willing to throw anything I could at my BC to up my odds even a little bit.
It's not been a bed of roses, but it's been manageable and I've been able to stay on the 150 X 2 dose along with my arimidex.
Hopefully someone else will respond to your question.
Amanda
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Thanks for the info on here. I started V end of feb of 2023. I been fine on it except really tried and smelly gas. Just started back after a Two week brake and really did t notice a difference still really tried it has wasn’t as smelly lol. Was on a brake for a hysterectomy. Is two weeks not enough of a brake to make the tiredness go away or is my other med making me tried?
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My onco recommended I start Verzenio after radiation and all the 'research' (read google) has definitely made it a struggle for me if I should take. Reading the posts still has me 50/50 oof. My onco said she would rather I be on it even though I had a pcr so I am gonna start tonight and see how it goes. I was told the smelly D would start about 3 weeks and take a couple of months to stabilize… yep, sounds fun :)
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I am on my fourth week of Verzenio and, knock on wood, I’ve had no diarrhea. My MO started me on 100mg. She said that her patients did a lot better at that dosage. I was scared to start too especially since I’m a teacher and can’t exactly leave 3 year olds alone. Hopefully things stay the same or it will be settled down by the fall. Fingers crossed you have good luck too. I’m scared I’m going to jinx myself!
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Well. I need to vent. I just returned from my oncologist appointment and I am on month 16 of Verzenio. My numbers have been oncology normal and I've managed a fairly good balance of keeping 9/10ths if the D at bay. My doctor told me today that he's looking at keeping me on this for more than the two years as I'm showing NED with 20 lymph nodes positive. I'm struggling with this. Seriously. I've been counting down the days, literally, until this was done and now find out I won't get to stop it at two years. Has anyone been told this as well? UGH.
I told him it was going to probably take me until next year to grasp the fact that I'd have to stay on it indefinitely. I just can't believe it…or at least not right this minute I can't.
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I have a feeling that being on Verzenio for more than 2 years will become the norm. My onco had mentioned the benefits increased if continued beyond the initial 2 years. I feel like she was setting up my expectations early!
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