Abemaciclib Verzenio for Stage IV
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Tigre,
Glad to hear you are getting a second opinion. Good luck!
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My D was manageable after tweaking my Imodium after 6 wks on Verzenio. But the fatigue was not although I was still bouncing back from radiation.
I am taking 1 150mg per day for the past week while I wait for scans to be scheduled. I have no D and lil fatigue. I would stick it out for the first month or two regarding side effects but if D is really bad it does take a toll on the body. I would ask your doc at what point would it make sense to decrease dosage due to SE.
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el-tigre, thanks for the info. I had to go to the infusion center yesterday for IV fluids because I was so weak. I needed a wheelchair to just get into the building! My blood lab work looked good so I just got fluids. My D is under control so that is not it. My oncologist said she would try a dose reduction and see if that helps. I have not had a scan since starting V yet so we don't know if it is even working. I can't live like this. I at least need to be able to take a shower and wash my hair without the fear of falling. My family and some friends are coming in two weeks to celebrate my 50th wedding anniversary. My son, his wife and my three grandsons are staying a week. Some others are staying about four days. I want to be strong enough to go out for our special dinner and celebrate a small reception the next day. We moved into our new home a month ago and we are just now feeling like we can have company so I know I have extra stress, but in a good way. After three more weeks I promise I will sit around and be a good girl!
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Hello All. I just wanted to drop a quick note and let you know my latest PET scan results show no cancer activity anywhere including the many areas of spine, hip, femur, esophagus, and liver that were previously active. So even though I am using Verzenio even after four years of Ibrance, and two additional years of other medicines, it is working for me. I am also on Faslodex (ouch) but apparently it is all working together so I will take it. I don't feel good and have no energy, but I will accept it.
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Intolight - Woohoo for NED!! Hopefully, the SEs will settle and you'll feel better and have more energy. What Verzenio dosage are you on? I stayed on the 150mg until I was NED, then reduced to 100mg. My main reason was to reduce the big D, but I was surprised by how much better I felt. I'd been reading that Verzenio is supposed to be equally effective at 100mg, but I was too chicken to take the "risk" until I was NED. I'm not trying to talk you into it - we all have to do what we're comfortable with - I'm just sharing my experience.
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intolight, wonderful news! We're glad to hear all your tests were clean. Thank you for posting to let everyone know.
The Mods
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seeq, I reduced to 100 mg after two months. I was just so weak I could barely walk across the floor. So I have been on 100 mg for two months now and got good results from that. I didn't know whether it would work but asked my oncologist for it and she agreed. I still don't feel well but am feeling stronger and have improved D so I will keep things here. I can't get my dates to reflect correctly in my history, but I was on Ibrance for four years, Xeloda for one year, Affinitor for three months, then after a four-month break while I recovered from Affinitor I went on Verzenio.
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Has anyone had to stop Verzenio for a length of time for rads or some other reason? On Friday I got scanned and tatted for radiation TX to my S2 region. The tech told me that the RO wanted to pass on I have to stop Verzenio 4 days before and 4 days after each tereatment. With my other rad treatments they were usually successive days. Either way I'm scheduled for 6-10 sessions. I figure I will be off Verzenio maybe 2 weeks or a bit more? I trust that the RO and my MO will discuss and agree to this and I'm expecting more info this week but the idea seems scary.
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That is great news intolight!
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emac877 - - I had cataract surgery a few years ago and went off Verzenio a week before and a week after for my right eye and then again for my left eye about 2 weeks later. I didn't feel that stopping Verzenio caused any problems.
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emac, I was off Verzenio for three weeks while I was waiting for a dosage reduction. Obviously it didn't hurt anything as I am now NEAD, after I have been on again for only one month.
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Intothelight- that is so exciting! I hope to put it on my list someday- there seems to be controversy re using it after Ibrance, but, also info that after a break from a CD4/6 inhibitor another one can work!
a few years ago my MO said no, I may see if she has changed her mind since there is more data supporting it. I hope your body likes it better soon.
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Thanks Intolight, and congratulations! Verzenio/Faslodex is my first line of treatment and I am still considered stable 2.5 years later though not NEAD. I've been thinking about asking for a dose reduction just to see if I might have better energy levels. This is probably not an ideal time for that but I am keeping it in mind to ask.
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Hi, for those of you who have been on Verzenio for a while, how long did it take until you noticed a difference, TIA.
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kittykat, I started late April and just got a no active disease report this week.
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Kittykat - I started Verzenio & anastrozole as my first line of treatment with large and numerous liver mets. I was NED in 7 1/2 mos. I'm still NED 24 mos later. Note: my TMs spike in the first couple months and were slowish to come back down - but they did
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Thanks seeq, it's only been a few weeks, hopefully it will work for me, it's my 5th line, I'd love to get something that will last and not try to kill me.
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Kittykat - I hope it works for you, too. You need a break.
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OK Ladies! I need a pep talk! I am 6.5 years in and Verzenio/Tamoxifin is my seventh treatment. I am 45, and own two companies. I started Verzernio/Tamoxifin last week and omg, I feel like I am going to die. I am sleeping about three-four hours more a day than normal, and my stomach is impossible. Normally I walk over 12,000 steps a day, and I can barely get to 2,000 right now. As part of my work, I have two major projects scheduled in Fall. (Don't hate me, but this will require visiting seven different countries over six weeks.)
Here is your job. Convince me that I will get this regiment and its side-effects under control enough to do my work projects. (I love my work. I really want to be able to do these projects. I specifically chose an oral regiment versus chemo so I could do these projects.)
Pep talk please.
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mikainsb, it can get better. I lowered my dosage after two months to 100mg because of severe weakness, and an doing much better. My fatigue is still there but improved. My diarrhea has also improved a great deal and I feel I can handle it fine. Last week my scan showed NEAD after only four months. I had many tumors imcluding several on my liver. None of them showed on the scan. You can do this, but you may want to discuss a dosage reduction.
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mikainsb - Verzenio is my first line treatment - 2 years and counting. The fatigue in the beginning was overwhelming, but improved over several months. I went from large and multiple tumors in my liver to NED in 7 1/2 mos. Dose reduction (150mg to100mg) at that time reduced fatigue and diarrhea issues for better QOL. Neither are 100% gone, but both are improved.
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Kittykat I've been on Verzenio about 9 months and fortunately have only a few bouts of D a month. I have had issues with ANC and could not tolerate ibrance, also had to lower Verzenio. I've had a lot of fatigue which goes up and down. Some might be blamed on thyroid apparently, started on levothyroxine. My last scans showed no progression or anything new.
mikainsb pack some Imodium and get a seat by the bathroom on the plane!! I'm finding it manageable but unpredictable. Enjoy your travels 😌 projects to enjoy are a good distraction from all the disaster. I have a snail pace and wipe out fast but can do some art projects and gardening if I space it out and try not to overdo on up days.
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Mikainsb - I think things do get better. I am one that only had the bowel issues for a few weeks. I had Imodium and Lomotil and all the things locked and loaded and ready to go but never really used them with any regularity. I am on Verzenio/Faslodex as a first line treatment now for 2.5 years. My biggest complaint is the fatigue. I can not tolerate activity like I did. I'm also more scatterbrained (which could be the lack of hormones too). Even so, I still work as a bedside nurse which requires a lot of me physically. Knowing that I try to stick to a regular sleep schedule. For me morning is my most energetic time so I do try to plan and get the hard stuff done then so I can slow down in the afternoons. I don't nap. I have to sometimes but I find it makes me more tired. I prefer to get really fatigued and sleep hard at night. On work days I do my best to eat smaller, nutrient dense meals so I'm not wasting a lot of energy digesting a huge meal while I'm working. It's hard to translate healthcare schedules to a lot of the traditional work weeks so not all of that may apply, I get that. I do think it's manageable to still maintain a somewhat normal working life. Some days I have to fight for it harder than others but I think the key is finding and making your own adjustments and back up emergency plans.
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mikainsb, the side effects get better with time. I started on 200 (think my oncologist was trying to kill me, lol) I'm taking 150 mg now. Fatigue comes and goes, not every day, the intestinal issues are better now and I am not taking any tummy meds most days. I do have Lomotil if needed and that works better for me than any other diarrhea med. Drink your water, track what foods help or make it worse. I cannot eat cauliflower, broccoli or any cruciferous vegetable right now. Oatmeal in the am helps and gets me ready to face my work day.
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Hello emac877 and All,
I was on 100mg Verzenio + Letrozol (Femara) for 2 yrs 3 mo and my cancer remained stable before switching to Ibrance + Letrozol. I switched because of low albumin, low protein with resulting lower leg edema and finally thickening of the bowel wall as seen on scans.
While on Ibrance + Letrozol all my GI changes/problems resolved, but now my cancer has progressed. I plan to ask my MO if I can go back on Verzenio (at a lower dose like 75mg), and switch to Fulvestrant instead of Letrozol.
When I started Verzenio I was told to follow a Low Fiber Diet - nothing with skins, so no fruit with skin, no berries, no nuts, no seeds, no brown rice, etc. I'm not convinced this dietary change was really necessary as I think I got best results controlling the diarrhea by using Imodium and some of the other interventions offered here like using metamucil.
My questions: How many of you on Verzenio follow a Low Liber Diet - like no berries, nothing with skin, no nuts or seeds, etc?
Thank you
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Hello el_tigre,
You wrote..."I am getting second opinions on every move from a diff ONC out of my area."
I'd like to know how you arranged this? How did you handle this with your regular MO? Is she aware? Did you inform her openly that you were getting second opinions? Did you self-refer to the ONC out of your area? Or did your regular MO make the referral?
I can identify with many of your comments concerns....I'm having serious trust issues with my MO....and I don't know how best to handle the situation.
If you'd like to private message me that would be fine.
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weninwi, I have not heard of limiting nuts, berries, etc. Is that just a diarrhea thing? I have good results on 100mg and don't limit any food. My diarrhea has resolved to a manageable level and some days is almost normal although not always. I have been on V since April this year and by three months went to NEAD after multiple liver and bone mets. I am also on Faslodex.
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weninwi - I have been on Verzenio just over 2 years (started at 150; reduced to 100 after NED). The reduction to 100 helped, but did not eliminate the GI issues. I have not removed any particular foods from my diet; however, I have reduced how much of some foods I have in a day. For example, I have only one piece of bacon, not two or three; and I still eat dairy, but I try to avoid heavy cheese or cream dishes (even though I love them); I don't eat many raw vegetables (no more salad for lunch). Again, all those things seem to help, but don't completely resolve the problem. I use immodium and simethicone (Gas-X; Phazyme) for days I have to be out and about all day (e.g. traveling), but if I'm at home most of the day I just deal with it. I'm retired, so that's most days.
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Thank you everyone who replied to my request for a pep talk. In three weeks on verzenio/tamoxifin, I went from CA27.29 of 1700 to a CA27.29 of 1000.
Three weeks and my tumor markers dropped by 40%!
On the other hand, my body is just rejecting the Verzenio. I am throwing it up. I have thrown up more on Verzenio than on any chemo I have ever done (and I have done five chemos).
I have been taking four immodium a day and zofran, eating only bread and still using the bathroom three to seven times a day. I am becoming malnourished and struggling with cramps, no doubt due to low potassium which is probably half a diet issue and half a diarrhea issue.
This dose, 150 twice a day, is just intolerably high for me.
I am super excited it is working... but... I have to step down. Hopefully my tumor markers will continue to decline on a lower dose.
Hugs to all.
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Mikainsb - Oh man, that sounds miserable. It's definitely a hard call. Yes, it may be riskier but if you end up severely dehydrated or have your blood levels get really out of whack, that is also dangerous. Hugs to you. I hope things level out.
Weninwi - This is the first I'm hearing about restricting any food on Verzenio. The only thing my MO mentioned was to watch the GI upset and figure out which foods weren't tolerable with my system. I know this is all about risk vs benefit but it seems like restricting foods on that description would also eliminate a lot of really beneficial nutrient dense foods.
I find myself questioning my next course of action. I have been off my Verzenio of 150/BID for about a week now and I feel so much better. I have more energy, my brain fog seems better, I'm reminding myself a little of who I used to be. I'll be done with this round of radiation tx and am due to start taking it again on Sunday 8/21. I really don't want to see this end. I'm on Faslodex but I'm really debating talking to my MO when I see him in September about a lower dose. I have been stable for 2.5 years though not NEAD. I'm wondering if it would be so bad to back off to 100 mg/BID instead of 150mg? I know seeq, you did this and it worked well for you. I'm weighing the risk vs quality of life and finding I can't really land on either side.
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