Stage III and Verzenio
Comments
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As another one with 20+ positive nodes, I’m curious how many doctors are recommending longer Verzenio for stage 3. At my last appointment, mine started talking about seeing me less frequently after my 2 years are done next spring. It startled me a bit!
What kind of ongoing scans are your doctors doing, if any? Mine is checking my blood work every 3 months, but nothing else.
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Txlorelei,
This was the first time mine had mentioned it to me. I had thought I'd be done in March of this next year. He then said since it seemed to be working, that he'd encourage me to stay on it so I don't advance to metastatic.
I was seeing my oncologist every two months and this month I asked if we could go to every 3. I get bloodwork done, including two cancer markers. I did ask for another Dexa scan and for CT's in January of this year. My oncologist said since I was still NED, that he wasn't sure if my insurance would cover them, but he would put the orders in. They did cover them and I had no progression, except for arthritis, I'm 59. But I FELT better about having them done.
I'm still struggling with the fact that my doctor wants me to continue. I talked with my husband about it last night and told him that I'd want to take a break, for two weeks, and then reduce dose to 100 X 2, instead of staying at the 150 X 2. And if I should advance on that, well then, so be it.
I can imagine that it would startle you. Mine had mentioned a few months ago about progressing to every 3 months from 2 and I told him I wasn't "ready" yet. It freaked me out. Yesterday I was ready to move to every 3 months but NOT ready to hear that I'd be staying on the V.
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Did the blood works progress to 3 months? I'm curious, as for now I have to go every 2 weeks for the first couple of months and then to 1 month. 3 months sounds better. I had also asked about scans and my onco said it wasn't recommended (unless symptoms) and just the blood marker test was FDA approved. It would be nice to know that it hasn't spread, but I would hate to get cancer checking to make sure I don't have more cancer 🤪
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@twilijay - I think I moved to the 3 month blood work/ doctor visit schedule about 6 months after starting Verzenio.
@kotchaj - I’ve been on the 100mg x 2 dosage since the beginning. I took a couple breaks while on vacations, so I should end up taking the same number of pills over 25-26 months rather than 24.
I’m glad the CT gave you some peace of mind. My doctor said she would only recommend one if I had concerning symptoms. At this point, I’m not going to push for it.0 -
I started at monthly bloodwork, then went to two months, now I'm at 3 months, yay!
I wonder what I'll be at once I continue past the two year mark? That won't be until the end of February 2024, so I've got awhile yet.
Every oncologist seems to do things differently. I have a cousin who is an oncologist in another city and he told me he'd never have put me on Verzenio, so, who knows? I'm glad to be on it since I'm a high risk of reoccurrence, but hadn't thought about being on it longer than the two years originally prescribed.
Txlorelei, I started at the 200mg dose. It was ugly. I made it two months, had grade 3 D. I've been at 150 x 2 since then.
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After seeing this post about Verzenio being continued past the 2 year point, I asked my Oncologist about it at my regular appointment. In my case, she said that there was no statistical data about being on it for more than 2 years, so it's a no-go for me. I am thinking that it might be because you had so many nodes affected?
Looks like my signature is no longer showing up.. (I had 8/20 positive nodes)
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My MO told me that I am not a candidate for Verzenio due to the fact that I'm in my 10th year out of treatment. I can't find anything that states that. Has anyone told that it is just for newly diagnosed women?
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Homemom - I don't have a citation, but it's my understanding that unless you are stage 4, it's just for newly diagnosed. I too was stage 3 at my original diagnosis back in 2018, but when Verzenio came out it would not have been an option for me (not that I would have opted for it anyway - would have had to research and weigh.).
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threetree Thank you for that. I just have to ask my MO more questions. She pretty much said that I've shown I have gone this far without a recurrence, it doesn't make sense to take it.
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Has anyone been told by their MO that they may want them on V for longer than two years? I can understand it if I was stage 4, I'm stage 3C, so close, but not quite there. I discussed it last time with the NP and she understood my concerns and that might not be the right thing for me to do. I'd like to keep something for if/when I go to stage 4 and that includes some bone marrow. Plus, would my insurance even cover that? I don't return to see her until December and my two years is up in March of 24.
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I’m terrified to start verzenio this week. Just wondering if there’s been anyone on it who has not experienced hair loss/thinning?
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@trv4764 - It's completely natural to have concerns when starting a new treatment. Hope you get responses to your question soon, and remember, each person's response to medications can vary. Good luck! We're all here for you!
The Mods
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Hi all, thought you'd be interested in this new research news story:
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Thanks for sharing this. I had sent this to my medical oncologist. Very promising results.
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I start this drug next week. I was scared about the side effects but I’ve decided to go with the attitude of… I’ve tolerated my treatment pretty well thus far, letrozole is kind of ok, and I’m hoping this will be the same. I’m grateful to have the option. I think it was only approved as a treatment for those with primary BC in the UK last year.
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@clars,
I have two months left on Verzenio, then I will have my two years in. I'm so thankful I have been able to take this and tolerate it at the 150 X 2. I really didn't want to have to reduce dosage and have managed to not.
My suggestions are:
I found that the multi-symptom Imodium was very helpful to me. I had stomach cramps and a burbley tummy and this helped not only the D but the other symptoms as well. I still take one pill every morning with my Verzenio pill and I am usually good to go for the day. I also started out on a very bland diet, rice, bananas, etc. I couldn't tolerate salad for a few months but can eat it now.
Fatigue. I work a full-time job as a lot of us do. I would take my hour lunch, eat something then power nap before going back to work. It helped get me through the rest of the day. I no longer have the fatigue on a daily basis, but when it hits, it hits me hard.
This is doable. And wonderful to have this option in our arsenal. I'd do it again in a heartbeat.
Amanda
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Hi all,
I’ve been on Verzenio for a little over a year and had to reduce dosage to 100 2x/day after about 6 months because of the cramps and diarrhea. I still take Imodium twice a day but it’s tolerable. My major issues seem to be fatigue, nausea and diarrhea.
I’m wondering if others have experienced lower appetite and increased fatigue and muscle weakness over time. I have always had a low appetite but the Verzenio makes me feel nauseous frequently. I also started taking Mounjaro and discovered that it kills appetite completely in my case. I find Premier Protein drinks tolerable and my GP says to focus less on calories and more on the amount of protein, vitamins and minerals I’m getting from the protein drinks. Not eating more solid foods sure helps with the diarrhea but I do wonder if it is a factor in the increased muscle weakness.Anyone else having similar issues?
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I started verzenios today (my team delayed the start date as they wanted me to “have a nice Christmas” - way to put the fear of god in me!). Anyway. Only 1549 pills to go! 😬
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Clars,
Good luck! Have your Imodium ready. My pharmacy actually sent Imodium with my first two week supply. I’m not sure how Imodium is packaged in the UK, but here in the US they use those annoying blister packs. However, I’ve learned that our doctors can write a prescription for it and we can get it in larger quantities in regular pill bottles. Makes taking it much easier.
Let us know how you do!
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Hi @kathrynw1thasea,
I had muscle weakness, still seems to hit me on occasion now, and I have three months left of Verzenio. I only get nauseous when I don't drink enough water. I almost get dizzy if I walk from my basement area, laundry area, to my second floor right in a row and have to stop at the top of the stairs to catch my breath, so annoying.
I've had diarrhea all along, Grade 3 when I first started, but I take a multi-symptom diarrhea pill every morning and Lomotil as needed. I usually need one per day, depending on how much it's hitting me and I've managed it with that. I don't have a day without the big D, but it's okay.
Hang in there. The fatigue comes and goes.
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Hi there,
I am back here at Breastcancer.org again after being away for a long time. I was just diagnosed with a Stage 3B recurrence. Exemestane and Verzenio are my prescribed treatments. I am at Dana Farber and the team is still coming up with the rest of the options as far as surgery and radiation. I just threw away my anastrozole in July 23 after 10 years and thought this was behind me.. !!!
Thanks for all the tips about Verzenio.2 -
We are so sorry to hear about your recurrence, @lenn13ka. Especially when you had passed the 10 year point. You had celebrated and hoped this was behind you. We're glad that you felt like you had a supportive place to return to. We offer free weekly meet-ups over Zoom for women going through early stage breast cancer in active treatment if you wanted support in addition to the forums. We have a list of the dates and times here, where you can register:
Please let us know if you have any questions and keep us up-to-date on how things are going for you.
Holding you in our thoughts. 🤗
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Thanks Mods.. still wrapping my head around this..
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Hi everyone, just checking in. I’ve been on Verzenio since late December and I am dealing with it so well. I’ve had a couple of mild diarrhoea episodes but nothing that required me taking any Imodium. In fact, they’ve stopped given me the supporting drugs to deal with the diarrhoea and nausea as I’ve never needed them.
My nurse practitioner called me up and said “you are so straightforward… I think I love you” 😆
I’ll take that!
I just wanted to share, as I was so scared before I first started and hardly heard any stories of people getting on just fine on it.
I did have blood tests every month for it but now I’m moving to every three months as all my bloods have been perfect.
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Hi clars,
I am so glad to hear about someone having an easier time on Verzenio. It will be encouraging for others to hear your story. So many of us on the forum have a hard time. It must be daunting to new folks to hear our stories. Please share your journey so that others can hear that it’s not always so difficult.
Thanks for sharing!
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mods,
Is there any way to get someone in the stage 4 Verzenio group to share information with us about the long term treatment experience with Verzenio? The stage 4 group isn’t very open to responding to a stage 3 person in their forum but there must be at least one person who is more likely to share advice to those of us facing the possibility that our oncologist will recommend that we stay on the drug past the 2-year mark.
I for one would appreciate the opportunity to learn from their experience.
Thanks
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Hi @kathrynw1thasea,
We'd suggest maybe posting a new thread in the Stage IV Open to All Contribute forum asking for Verzenio experiences. Or do you mean to have a MBC member come here to post on this thread?
Let us know!
—The Mods
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Mods,
I meant to have a MBC member come to this thread. I didn’t know there was a Stage IV Open to All Contribute forum. I will try posting there as well, but I think it would be beneficial to the Stage III Verzenio group to have get information from a long term Verzenio “user”.
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We'd be happy to post in the Stage IV Verzenio thread asking for anyone who wants to share to come here!
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I've been on Verzenio for 3 yrs and 8 mos. I had a dose reduction from 150mgx2 to 100mgx2 after 7½ mos. Verzenio kicked my liver mets to the curb in those 7½ mos. My dose reduction was 1) after I had clear scans, 2) to help with the GI issues, and 3) had the unexpected benefits of less fatigue and some hair regrowth.
I still have some GI issues, but not as bad. I've learned that I can still eat most foods in moderation - meaning I can eat 1 piece of bacon instead of 2 or 3, and I can have a salad with a meal, but not as a meal. I try to avoid large meals, and especially large meat portions. Taking a dairy digestive (like Lactaid) has allowed me to enjoy dairy-intense meals/snacks - for me, that's milk, cheese and ice cream.
Immodium Multi-symptom and simethicone (Gas-X, Phazyme) are part of my arsenal, but I don't take them daily. To be fair, I retired after my dx, so I'm not out in the world every day. When I travel, or have plans out for the day, or my body just tells me it's going to be one of those days, I take Immodium to help prevent any issues.
I was dx'd Stage IV de novo (no prior bc - after having years of clear annual mammograms), so my decision process has been pretty straightforward. I can't imagine having to weigh the pros and cons of this treatment in a "what if" scenario.
I hope this helps. Tag me if you have specific questions.
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