Abemaciclib Verzenio for Stage IV
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My wife's next scans are around 5 weeks from now. The falling tumor markers is giving us a bit more of a sense of ease of anxiety. But when they rose, it did just the opposite.
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Husband11, thanks for the info on your wife's TMs which has put my mind further at ease. My TMs were up again with last weeks labs, but now I know to be patient cuz it'll take time.
H&G, thanks for the support. Three month scan can't come fast enough for me now.
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Hello,
I had to reduce my Verzinio to 50mg twice a day as I was unable to tolerate the tummy issues and skin rashes on a higher dose. I have extensive bone mets since December 2014 and a few Liver mets showed up in 2017. I’ve been on Verzinio ( with Faslodex) for over 2 years with stable scans even on the reduced dose. I read up on the initial trial results and it stated that dosage didn’t seem to affect progression free survival time. My oncologist said that these drugs work different to chemo where higher doses of the drug are more effective, however they are still told to throw the higher dose at us first.
I wouldn’t hesitate to reduce dose xx
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Mermaid, that's interesting about your dosing and something to keep in mind. So far, I'm tolerating 150 mg twice daily, but I'm only starting my 6th week, so who knows in the future. Yay for your 2 years of stable!
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Hi, I have though that this paper is interesting...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC75864
abemaciclib as one of the potential repurposed drug for COVID 19
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Maaki, it is interesting. Unless Eli Lilly drastically reduced their price, it seems like it would be cost prohibitive. Maybe large scale demand would be enough to bring the price down?
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mshar - I think there are scattered posts throughout about hair loss on here. It seems to be a bigger topic with the non-stage 4 chemo boards. It's been a struggle for me. I had long hair for years and have not been able to grow it back since Chemo. I'm worried it may never grow long at this point. I don't know. Verzenio has left a very distinct female pattern baldness to the front and crown of my head. I have tried several oral vitamins and topical products, none of which has helped. I can't say that it's solely Verzenio, it may also be the exemestane but I feel like the main culprit is Verzenio. It seems like I am dealing with hair very different from my pre-cancer hair. It's a whole different texture in parts. A year in to my stage 4 diagnoses I am still trying to figure the hair thing out. I use large headwraps/bands a lot and wear my beanies in the winter.
It feels like such a vain thing to worry about in the enormous burden that is cancer but the hair loss thing was a definite blow to my confidence. Its been one of the harder things for me to come to grips with and I still cry about it from time to time, as stupid as that feels to actually admit. LOL.
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Emac877, Your not being vein and it’s completely natural to worry about our hair even with stage 4 diagnosis. I think any type of chemo will effect hair. With my stage 1 diagnosis 4 years ago I did the cold capping with that IV chemo. Still lost a lot of it. It did grow back. But it’s normal to worry about our hair no matter what stage we are in. Hopefully yours will fill in a bit. You ca try hair toppik. It’s a powder that comes in your hair color. It fills in any thinning spots on head. I did that while on cold caps. Ulta sells it. Hugs everyone. Happy Valentine’s Day.
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Well. here I am. It's been five years since my original diagnosis, and two weeks ago I was diagnosed with mets to liver, perineum, ovary and probable small bowel. Doctors said they could not biopsy affected areas (too dangerous) so diagnostics were done through 1) CT and 2) analysis of fluid that had been accumulating in my belly for several weeks. Letrozole and Verzenio have been prescribed (waiting for insurance company approval for Verzenio). I am struggling with pain and getting good nutrition (on a very limited diet due to the small bowel swelling). I can't help but feel as though medical professionals had missed something throughout the past year. I'd been having lots of GI symptoms, yet several times I was sent away with a diagnosis of Irritable Bowel Syndrome. I hope to have a second opinion at Dana Farber soon. I'd like to know why Verzenio, and not other treatments (chemo, Ibrance, etc.) has been recommended. Needless to say, I am very frightened.
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Thank you all for your thoughtful comments on hair thinning/loss. Emac877, I feel exactly the same way and just cried last night. Even though I was diagnosed de novo, I pushed my doctors to do AC and taxol, and then I went straight into hormone therapy. I did cold capping but still ultimately lost all of my hair after AC. My hair has been slowly but surely growing back - even with how much the chemo and HT took out of it - and I've only in the last month started to feel a little normal again. I used a wig for 2 years (even saying that seems crazy to me! although I guess the second year was a lot of inside time due to the pandemic) and only just stopped, and now all of a sudden my hair is shedding like crazy. It's a bigger blow than I expected it to be. I'm optimistic that others on here said they had a bunch of thinning that then tapered off, I'm keeping my fingers crossed it will be the same for me.
Husband - I've been on 250 mg total for about 9 months - I started with clean scans and they've stayed clean during that time so everything I know suggests dose reductions are ok.
Gardengypsy - I'm so sorry that you're here, but glad you're here with us. There are so many treatments out there and I think you have every reason to be optimistic, but I completely understand your fear, we are all with you and have been there before. I would definitely push your doctors on why they chose verzenio. My understanding is that there isn't much difference in effectiveness between the CDK4/6 inhibitors. I've been on both ibrance and verzenio, and ibrance is MUCH easier on the digestive system in my experience.
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Gardengypsy, I'm sorry too that you've been dx Stage IV, but glad you found us here. You'll definitely want to ask your MO about the Verzenio choice. For me, it was because other drugs failed me, but you're just starting out. My MO chose it for me over Ibrance because in her experience it's been easier on her patients; it has been for me. Having said that, others like mshar, have had an easier time with Ibrance which goes to show everyone is different. I hope you get some good info from a 2nd opinion at Dana Farber. Best wishes.
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Gardengypsy,,,sorry about your diagnosis. Your definitely in a safe place here and you will get lots of info. My MO first chemo pill choice was Ibrance, but I was having issues with my hemoglobin and Ibrance was not helping so he then put me on Verzenio, so far so good as far as crazy side effects. Wish you the best.
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gardengypsy - sorry you had to join the club, but welcome. It’s scary, especially upon diagnosis, no doubt about it. In the verzenio trials, the subset of patients with visceral disease seemed to benefit more than the overall population, so verzenio may be chosen by MOs over Ibrance for patients with visceral disease. My first mets were to liver and I started on Ibrance but my neutrophils could never recover and I was off more than I was on it, even with a dose reduction. I switched to verzenio and had GI issues, but dropped a dose and now am managing it ok. Had shrinkage of tumors and now stable disease about 2 years....counting and praying. Of course some side effects. Many SE get better with time and you learn how to manage them. I wish you much luck and hope this treatment knocks them back! Ask any questions you might have
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Gardengypsy - as others have said, I'm sorry you had to find yourself here. That said, this is a great place for support and feeling less like you are alone in this. I was put on Verzenio as a first choice with my Stage IV diagnoses because during my initial diagnoses and tx with TC I was hospitalized with neutropenia twice and Ibrance has a higher incidence of neutorpenia risk than Verzenio. My doctors office had several fights with insurance over that decision. I would encourage you to ask questions, a lot of them. I sometimes feel that I am driving my MO crazy with my questions but it's easy to get shuffled through the system. We have a right to know and understand the options and treatment decisions being made. Hugs to you as you settle in with all of this new information.
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Gardengypsy, so sorry you find yourself in this group. The early days after diagnosis were the hardest. I'd say don't do it, but I'm sure you've been all over Google by now,. Just keep in mind that there have been incredible improvements in Stage IV treatment just in the last 3-4 years, and our outlook is often much better now. (I speak from experience; I scared the crap out of myself - I think we all do). When you're reading, be sure to check the date on the articles and keep it the proper perspective.
I was diagnosed de novo with one very large, one large, and numerous smaller liver mets last June. Verzenio (150mg x2, plus anastrozole) is my first line of treatment, and it's still working very well for me - liver enzymes and TMs dropping, second follow up scans tomorrow to confirm. Verzenio is supposed to be better at crossing the blood brain barrier than the other two. Each of the CDK blockers (Ibrance, Kisqali, Verzenio) have their own side effects. The worst for Verzenio seems to be the diarrhea, which many can manage with a combination of Metamucil and/or Immodium; and if not, dose reductions are common and reportedly do not change the drug's effectiveness.
I'm so glad you are going to a good center for a second opinion. It will help you feel comfortable with your treatment, and hopefully put your mind a little more at ease. When you're ready, check out the liver mets thread <How are my people with liver mets doing?>. There are a lot of very knowledgeable and caring ladies there. Sendind cyberhugs your way. Please come back and let us know how you're doing.
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seeQ,,,, good luck on scans tom
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hi everyone , so I just had my follow up today with MO , last Thursday I did labs, today was my follow up, so my ANC count is low. It’s at 0.5 he wants it at least 1.0 so he’s taking me off Verzenio 1 week. I do labs again next Wednesday, if ANC is better I will go back on but at 100 mg twice a day. He already ordered the new dose. I’m disappointed I have to b off for a week. I pray next week my count will b at least 1.0 so I can get back on. I’m ok with the dose reduction because it seems like the effectiveness is the same. Question? Does your MO have u take a break when ANC is low. Thanks. Hugse
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My wife is permitted to continue even when her neutrophils fall to 0.5. Not exactly sure why.
There was a woman on here who posted that just prior to her blood draw she would run a few flights of stairs to boost her neutrophil count.
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I don’t have the same problem on verzenio, which is why i switched from Ibrance to Verzenio. Ibrance knocked my ANC too low and could not recover in the week break. Had to go 10 or more days. But yes, there were dose delays imposed when I dropped below 1000. No dose until I hit that magic number. On Verzenio I have not yet dropped below 1400.
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Hi I have had to take 2 (1 week) breaks from Verzenio due to low neutrophils at 0.91, I was told by my pharmacist that the Verzenio stays in your system so a week break is not a problem. After the week it goes back to just above 1. My oncologist seem to suggest it wasn't too serious to be at 0.9 he did some fast mumbling calculations which I didn't really follow but he also felt taking one week off was fine in following the protocol. I am guided by the Verzenio leaflet and then referencing the CTCAE which grades toxicity to cancer therapy and of course the experience and knowledge of my oncologist. Will find out my blood results and bone scan report next week - hoping it will be okay as have noticed few extra bone pains and balance seems a bit off,
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thank you guys for your replies. Nnc,,good luck on blood work n scans next week.
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SeeQ, emac877, Hopfull2, Hope and Gratitude,Bliss58, mshar ~ Thank you so much for your kind words. I have been curled up in bed for nearly a month, barely looking out the window. It took weeks to be diagnosed (the first rural, local hospital was worthless). For the past couple of days I have been trying harder to lift myself out of this depression, and I am getting up and moving around more. Painkillers are helping. So has my oncology therapist, who has referred me to the hospital's oncology psychiatrist. Here in Vermont, the spring weather will help. One day at a time.As I begin Verzenio, I am seeking information onwhether or not it can be used in conjunction with mushrooms (ie Turkey Tail, Maitaki, etc.). The MO says "no" to ALL alternatives but I sense that it's something he feels he has no expertise with.
I'd appreciate hearing any thoughts you have or research you've located. Thank you. Blessings to all.
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l just have to vent about my specialty pharmacy, my cancer center and insurance! I know weather problems are beyond all of their control, but I'm just so angry that I will have missed 10 doses by the time I receive my Rx Wed. IF I receive it! This is exactly why I hate Rxs by mail! This problem is FedEx and everything going through Memphis. With no power, they can't send or track. The insurance is thru DH's job and state contracted. The only way they'll cover my local specialty pharmacy is if the pharmacy pays up front which they won't do. Ugh! So today, I get the bright idea that maybe UPS isn't having as bad a time. I called the specialty pharmacy to see if they can resend with UPS. Sure enough, after eternal hold, they tell me UPS can deliver! But, now we're passed the overnight deadline, so it'll arrive Wed. I was on the phone with them for 2 days last week. Why didn't they think to check another carrier? Wed. I also see the PA and I'll tell her I'm not very happy the cancer center can't help with a backup plan. We'll that's my rant. Hope you all have a nice night or morning depending on your location. Hugs.
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gardengypsy - it’s good you are seeking help and maybe the psych can help with meds or alternatives. This road is not easy but you are not alone. Remember that. Once they get this under control you will have some time of peace -hopefully a long time. I don’t know that we ever get used to knowing we have to deal with this disease, but one day at a time, one step at a time. Don’t look too far down the road. Stay in the present. And know we are here for you.
Bliss - ummmm, YES! I would be outraged! The specialty pharmacy KNOWS you NEED this drug and they should have checked alternatives to get it to you. That’s crazy!!! My specialty pharmacy always seems to send me a new 4 pack when I am only about 2 packs in to the last 4 pack, so they give me a lot of overlap. There is no way you should have to be without meds. Can your MO do the renewals differently so you have an overlap and don’t risk being without0 -
Gardengypsy - I can't help you at all, but your specialty pharmacy my know about possible interactions.
Bliss, yes, I'd be beside myself.. and in their ears every damn day. How long have you been waiting? It sounds like you have a case for a longer overlap of refills. I recently changed how I get my Verzenio through my insurance (to save $$), and they have had an earful from me twice (for my first two refills, btw) about how their process isn't apprpropriate or sufficient...and that's without weather delays. I try to be nice and patient as long as everyone's...ummm...invested...AND the end result is acceptable. But, sometimes, you just gotta put on your btch hat to get things on track, and I'll do it if I have to. (Note: For me, that doesn't include yelling or cussing, but being very direct, sometimes blunt, and intractable.)
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bliss , I was told same thing today about the weather ,, so MO is ordering me a lower dose 100 mg If my counts ok I can start that on Thursday, today I called pharmacist to b sure it will b available by Thursday so I can start ( assuming my ANC is ok ). He said if the weather permits Verzenio should hopefully get to pharmacy Tomm. Good thing I have until Thursday Cuz I do labs Wednesday,, but fed ex or whomever needs to figure this out. Like others mentioned , try abd have your prescription filled at the 2 or 3 week mark.
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Hi there. I was diagnosed with metastatic breast cancer September 2020, seven years after my original diagnosis. Mine is in my bone marrow, so fairly rare. After 6 rounds of chemo, my packed cells have gone from 70% to less than 5%. I start Verzenio on Thursday after meeting with my doctor. Have to say, each new step of the journey makes me nervous. I guess the possibility of the side effects. So far I've been pretty lucky. Although I'm entering this new treatment still bald from the chemo. Guess I don't have to worry about my hair falling out, just not growing back. Besides diarrhea, is there anything else I need to worry about?
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hi Grammy Kate. Sorry on your reoccurrence. I’ve only been on it a month , and my diarrhea was not bad at all. I mean I felt a bit more air in my stomach then. before. I had diarrhea maybe twice. But nothing like what the girls report on the post. Verzenio even mailed me like 4 boxes of anti diarrhea pills fr just in case. Hopefully will be lucky. My ANC counts did drop low on verzenio. So now I’m off a week to let them recover. So just watch out for that. Hugs
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GrammyKate, the fatigue was worse in the beginning, and improved after a few months. My joints ache, but I attribute that to the anastrozole. My blood counts have all stayed good enough, throughout, with no breaks ar dose reductions. I take 150mg twice a day, plus anastrozole.
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Hopfull2, good to know. One thing with it being in my bone marrow is my numbers started out really low, especially my platelets. So they plan to keep a close eye on those.
SeeQ, I was on anastrozole for 5 years. It's harsh. I seem to be tolerating the Aromasin much better. I'm starting out on the 150 mg twice a day. Keeping my fingers crossed.
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