Abemaciclib Verzenio for Stage IV
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@dulcea Here is the link!
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@moderators thanks for the link. I wasn't sure how to do that. It was helpful for me to narrow down next treatments. My MO agreed with it all too!
@marcials1 your liver numbers can be affected by the Verzenio so don't panic yet. It's probably not liver mets! Yes, I've had liver mets since the beginning but my liver numbers have never been wonky except when I was on Ibrance. So bad liver numbers don't mean cancer and cancer in the liver doesn't always show up in bloodwork. Crazy disease, huh?
@intolight I am sorry to see me go too! I wanted a couple years on Verzenio since it was fairly tolerable as long as I took my imodium! Looks like you are doing well on it so keep that in mind. I think the longer you do well, the longer you will continue to do well. When you say "losing ground" do you mean physically? Or mentally? Let me be frank: please get some antidepressants if they are warranted. I read through one of "things to read when you are first diagnosed" -or something like that - and one of them was to take antidepressants if needed! I will pop back here too to see how everyone is doing.
Also if anyone is interested, the MO also suggested that future treatments could include chemo or ADCs (antibody drug conjugate such as trastuzumab - brand name Herceptin) due to PIk3A mutation. Since I also have a ESR1 mutation, she thought the Elacestrant could also be an option but since I was on the CDK4/6 inhibitors (Verzenio & Ibrance ) less than a year then it might not be beneficial. What? Need to look into that too. So much to learn. Even though I'd rather not.
Stay strong everyone!
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@dulcea I have been on Verzenio for two years now and still doing pretty well although my previous MRI scan showed something in the liver—they didn't call it mets yet but recommended further scans, hence the CT scheduled. I was on Ibrance for four years as my first med so I do well with TK inhibitors. I have none of the regular mutations so I am unsure what my next med will be. I haven't yet looked at the treatment link. Originally I was dxd with bone and liver mets de novo. We have been able to get the bone mets stabelized over the years but the liver ones seem to hang around a little. By losing ground I mean QOL—increased fatigue, nausea, etc. Six months ago I was able to cook dinner for company, do the dishes, go grocery shopping, and shower without having to sit down during the process. I could even sometimes walk my DGD the quarter mile to the bus stop! Now I can barely cook dinner, and taking a shower is quite an ordeal. My DH is helping me more and more. Early morning appointments are impossible. We still have four of us living here and dinner was always my contribution. I am not happy about this.
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Well my MO has decided to reduce the dosage of my Verzenio to 50mg. She says the older you get the slower your body metabolizes medicine etc., so the stronger the side effects. As some of you already know Verzenio still works fine at the lower dosage. It is a good one for me. I have been on it for two years and she made the side remark I will be on it for a long time. Apparently they start you on as high a dose as you can tolerate. I started at 150 mg, am currently on 100mg, and will move to 50mg. That's fine with me. I can't continue like this…
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@intolight ‐ I hope your dose reduction helps you get your life back. Hugs.
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@intolight 50 mg for me was heaven. Huge difference! I wish you the best on the new dose and for many years to come. You'll be in the kitchen cooking in no time for your family!
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@intolight @seeq @dulcea hi I’m stopping by to check in and see how you are all doing on your Verzenio. I’ve been on Verzenio 150 mg twice a day for a year and 1/2 since January/23. The diarrhea was an issue and I had to plan my days around how well and how long the immodium would work if I wanted to leave the house. My onc reduced the dose to 100 mg twice a day and it’s made a huge difference. The diarrhea is once in awhile now. I get backed up and take Colace now. The Fasoldex shots and XGeva shot every month make me constipated. Im still very tired and foggy, but the diarrhea has resolved from the dose reduction of Verzenio… my. Hair is growing thicker again since I’ve been taking collagen, biotin & inositol.
So have a beautiful day today 🩵
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@shanagirl I have been where you are, but I am now waiting on another reduction to 50 mg after almost two years at 100mg. According to my MO I am just getting worn out and my old body can't metabolize meds as well so my SEs are more intense. My new dosage pills should arrive anyday now.
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Nice to hear from you @shanagirl and I am so happy that you are continuing with great success on Verzenio. I didn't have the same luck and next week will be starting Truqap. More nasty side effects but I am a professional Imodium-taker now after dealing with D on Verzenio.
Good luck @intolight . I bet you will feel so much better soon!
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@shanagirl ‐ I have been on V for just over 4 years now. At 150 for the first 7 months, until I reached NED. Reduced to 100 for D, had the bonus of more energy and more hair growing in (2 separate layers a few months apart. Immodium and Gas-X are still my friends and I never leave the house without them. Since we like to travel, I used them profalactally, and it reduces the stress (and emergency pit stops). I added biotin to help with my nails, and it has, but they're still bad.
@dulcea I'm sorry you're having to leave V so soon, and I hope the Truqap worries wonders for you.
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@going2beatthis How are you doing? Have not heard from you in a bit and hoping you are doing well.
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@marcials1 - am doing ok. Have been dealing with some se from the 5 SBRT treatments I had the week of July 15th. Avoided most of the fatigue but was dealing first with headaches (taking advil and tylenol alternately every 3 hours) and now with sensitivity and redness to the area (forehead and a section just above that). Am losing some hair, but so far no huge clumps. Started back on advil this morning to hopefully help ease the sensitive areas.
Thanks for thinking of me. Hope you are doing okay.
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@going2beatthis I am glad to hear you are doing ok. Sorry you're dealing with the SBRT side effects. Will be thinking about you.
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hi, All
Is there anyone here with RB1 mutation?
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Hi everyone. I remember reading somewhere that there was a place to send unused medication that someone else could use. I have a ton of Verzenio and it's worth over $30k. I'd hate to just drop it in the pill box at CVS. I'm not sure if I read it here or on the Ibrance page. Maybe the @moderators can help too? I've tried searching to no avail.
On a side note, I just finished my first cycle of Truqap (4 days on, 3 days off) and so far, so good. The pharmacist said that that the medication is cumulative so the side effects don't start for a few weeks. I am enjoying this time! I just hope its working!
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@dulcea I just started my dosage reduction yesterday so I have lots of Verzenio 100mg left also. Usually my MO office pharmacist accepts it but my MO acted like she didn't know what I should do with it. I think she was just ready for our appointment to end… I shall ask around too. Let us know! It is too soon to guage my SEs yet but my family wants to try a Christmas Cruise so that is my goal.
@going2beatthis Praying you can get all the SEs from your treatment under control.
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@dulcea Yes, there is a place to send your Verzenio. The best person for that is KBL. Don't think she is on this thread. She is on the board and posts to the Zoom Meet-up for Those With MBC: Place to keep chatting or you could send her a DM.
Glad to hear you are having an easy time with Truqap so far.
@intolight - thx. Headaches have pretty much stopped. Redness still there and slowly getting better. Just got my labs back. A number (6) of my CBCs are low. Wonder if that is from the SRBT treatments.
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@dulcea and @intolight, The Wyoming dept of health will accept donated meds from all 50 states. Some states like LA have organizations that will accept from state residents only. Since my state has no program I always ship to WY. Thowing them out is such a waste when there are so many in need.
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@dulcea Good to hear that your first cycle of Truqap went well! Happy to hear that and hope it continues! I had heard from my MO team that Verzenio would take back unopened packages but they do not. I checked with them. I take unused unopened meds to my pharmacy but you have quite a bunch! Thanks for the info @going2beatthis
@intolight I know that feeling when your MO just wants to be done. It's frustrating. I have all my questions in my phone and I won't leave until they have all been answered. I hope your reduction works for you! And that Christmas Cruise sounds amazing!
General question to anyone - did anyone have delayed side effects to Verzenio? I had been cruising along fine and then on July 1 I started having headaches every single day. Had an MRI and skull mets not growing. Thought it was weather related and have been taking Claritin and/or Ibuprofen every single day. I'm wondering if maybe due to the lower white blood cells that maybe I am more susceptible to allergies such as pet hair and mold? Any thoughts? I took a 3 day break from Verzenio and headaches went away. I also pretended I was on vacation and had 2 beers after yard work yesterday and a mimosa this morning! I am going to do that every few months just for sanity. Assuming that my MO visit on 8/20 goes well. Crossing fingers.
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Marcials1 - I get periodic headaches and I think they can come from any of the drugs I take (fulvestrant, Verzenio, and Zometa). Headaches are listed as possible side effects for all of them. Of course things like dehydration and allergies can do it too.
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Hello @dulcea , regarding where to donate your unused Verzenio, we suggest contacting your oncology center first, as some hospital's cancer centers will accept such donations. You can also try reaching out to this program:
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@marcials1 no, not just to young kids. About 3.5% ER+ patients develop this mutation after first line treatment. And it’s the most important gene to drive CDK4/6 resistance. So far they have no alternative treatment for it. :(
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@threetree You are probably right about that. Beats the alternative!
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Thanks everyone for the recommendations for the extra Verzenio. My oncologist told me to call the pharmacy, which I already did and they don't have a program for that but recommended I just drop it in a local drop box! Yikes!
I'm finishing my second cycle with Truqap and here comes the D, so I'm stocking up on Imodium. Thankfully, that's it so far. Just thought you might be interested.
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