Abemaciclib Verzenio for Stage IV
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I avoid aspartame like the plague.
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anyone else losing excessive amounts of hair? I lose this much during every shower. My hair has become SOOO thin ☹️
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I started losing hair after about 4 months on Verzenio. I've been on Verzenio now for 25 months,and I have very thin hair that is almost wiry in texture. I've been wearing a wig for about a year and a half. I'd lost my hair three times before, and my hair came back as normal hair. What hair I have now is certainly not normal!! Thank goodness I found a couple of wigs that look realistic.
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I'm so glad I saw this post. I've been on Verzenio 8-1/2 months and about a month ago I noticed I was losing a lot of hair. I didn't think it was the Verzenio at first because I figured it would have started many months ago considering I've been on the medication for this long. I had pretty thick hair to begin with, but it's pretty distressing to lose this much hair. I'm hoping it slows down pretty soon. How long has yours been falling out?
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I believe Metamucil does have a sugar free version. I'm pretty sure any product with Psyllium will work. Some of the health food stores probably have something without sugar or artificial sweeteners.
Good Luck.
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I never use artificial sweeteners, but I will see if this (w/ aspartame) works before hunting down another version. I should know in a few days Rene! Started yesterday and I figure it will take a few days for my system to get used to it. Noticing some changes already but hate to get too hopeful...but if this works, game-changer
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I have had thinning of my hair but it seems to have hit a plateau. The texture is certainly not great! I have baby fine hair to begin with. Been on verzenio 10 months, Ibrance prior for 6 months.
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I was on Taxol so lost all my hair then. And it was very slow to grow back. Now on Verzenio. Hair is slowly growing back but looks pretty pathetic - thin and sparse and big bald patch at the crown.
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I started V mid December at 100 mg, went to 150 mg May or June. I noticed the hair sometime after starting the 150 mg, don't remember exactly when.
Edited to add: I had a horrible "D" accident yesterday. Just let me say I had to wash the floor, the toilet and then take shower. Brought me to tears. I'm half tempted to quit all treatment. In 6 years of being stage IV, I have felt fine, no pain. My TM's continue to rise no matter what treatment I'm on. Mets only in the bones, no organs. Why suffer through all of these treatments when I feel FINE. I told my MO, my only complaint is SE's from the drugs, NOT THE CANCER.
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Goldie- I think sometimes this is why some MOs don't look at TMs for every patient. I can only imagine your frustration. 150 mg V is not necessarily better than 100 mg. I think you will even hear that from FDA with data to back it. Usually the MO will start at the highest dose (max tolerated) but for many people, its just too toxic. It was for me. I do agree that if you only have bone Mets, then that treatment is likely different than those of us who have Mets to organs. Would think some of these meds they would want to reserve in case you do get other spread. Talk to your MO? another opinion?
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Thanks HopeandGratitude. I am still waiting. I had a follow up MRI and the most concerning area is a 12" spot on the left tibia. The report reads that it could be avascular necrosis vs necrosis with overlying metastatic disease. I'm not really sure what that means. I had the MRI on 8/4. My appointment is 8/18. In my head I tell myself it's only been 11 days since the MRI but it's a long 11 days with a lot of what if's. My coping strategy is to try not to think about it but you are right. This takes over a lot of life. I am focused on what I can do but as this progresses I'm discovering that I may need to change jobs because I just can not handle the physical aspect of my current position any longer. We'll see. I could have all kinds of opportunities to try out come Tuesday.
I am on the 150 mg dose so I don't know if we'll bump up to the 200 or just go another route. 0 -
Hi Goldie, sorry to hear about your D accident. I've had a few of those since starting on Verzenio. It's so humiliating and embarrassing and no one who hasn't experienced it fully understands how it feels. I share your frustration and have also thought a few times about discontinuing the Verzenio. I pretty much have the D under control (for the most part) but the weakness and fatigue is really hard for me now. I use to love to go hiking with my son when he comes to town, that was a thing we always shared, but the past few times I tried to go I just didn't have the strength or the stamina to do it. Those are the times I just want to throw in the towel with this medication and let nature take its course. I honestly don't know what the right answer is regarding this medication and its SEs. At the end of the day I'm grateful to still be here in spite of the adjustments I've had to make to my life. I have a lot of people and a few pets who depend on me and I owe it to them to keep moving forward. I wish you the best and hope the SEs become more manageable for you.
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Hi Hope and Gratitude. I'm glad you're giving the Metamucil a try. When I first started on it I was leery myself. I slowly started adding foods back in to my diet that I had been avoiding. I don't remember how soon I started to notice a difference but I don't think it took too long before I saw a change in my bowels. Keep me posted. I'm keeping my fingers crossed for you.
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Goldie, I've had accidents also and it is very hard to recover my spirits afterward. Even when my gut is quiet, the threat of it is always just a minute away. It shakes my confidence and my desire to get out and do anything.
I echo H&G's encouragement to demand a dose reduction to 100mg. That made a HUGE difference in my QOL. I still have big D attacks but they are much less frequent, and they are more responsive to diarrhea meds, probiotics, careful diet, etc.
If you are bone-only disease still, you have a lot of life left. Fuss like hell until you get some help with this. You deserve to feel better.
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Thank you ladies for the support! One of the reasons I love this place! I don't have to ask my onc to reduce, if I want to reduce I will. Plus my onc is ok with me doing that. He tells me "it's your ship, and you're the captain". I love him. I will try the pills first for the psyllium and see what that does.
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lulubee, thanks for your comment about how it's hard to recover your spirits after having an accident! Oh,yes!! Had a bowel accident at my sister's house. She was lovely about it,but I felt so terrible. This week I had an accident at home while throwing up. Just peed my pants that time, but it was a mess. Had to jump in the shower. My husband's sweet and takes it in stride, but I am embarrassed and a little ashamed . I've had a rough couple of weeks, and these side effects can get a person down. Goldie, thanks for starting this discussion.It really isn't something we talk about except with people who live it, too. Good to have s safe and understanding place.
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thank you vinrph , saw my oncologist yesterday for the butt shots, she is lowering the verzenio to 200 mg, I've been off it since Tuesday , still running these fevers! So frustrating, I do.tend to take my dogs out to the pool everyday, I can't keep them away but wondering if because I'm out in the sun daily, with sunscreen on of course, the sun's heat is making my body temp rise.....I.dunno, but every evening around now the fevers start......very frustrating.....my butt hurts so bad today, new nurse and she didn't do it right!!!
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Well, let's just talk about the poop problem.
What do you do that helps?
I wear a thin, super long maxi pad every single day. I have learned to RUN to the toilet at the very first subtle twinge of my gut rolling over, and to not wait till I'm sure there's a problem brewing. JUST GO.
I keep a small clean-up kit in my purse and I've had to use it a few times. It includes: several individually packaged flushable wipes, two maxi pads, a pair of panties, hand sanitizer, a ginger candy and a single packet of Pepto Bismol in case I'm also nauseated, plus a stick pack of electrolyte powder to add to my water to help me recover from the dehydration.
Probiotics help a lot. Take them morning and night for a while to see if you can get ahead of it.
Electrolytes help.
Avoid raw foods.
Always wear black pants and a tunic top or long cardigan whenever I'm away from home.
What else, ladies?
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FiberCon tablets (calcium polycarbophil) act to hold excess fluid volume in the lower intestine so work for both diarrhea and constipation. Easier to take than psyllium, in my opinion as a retired pharmacist.
I've only had one messy event, at home, due to not jumpimg out of bed in time to get to the toilet. I think it strange that my bowels decide to relax, not just when lying down, but only once the room is dark and sleep is supposed to be the next thing on the agenda. Not every night but pretty often. At least that makes it somewhat predictable!
As far as hair loss, mine occurred the winter following my metastatic diagnosis. Or at least it was more noticeable then due to wearing dark colors: being blonde, strands were showing up on my black wool jacket, etc. I had also started Faslodex which I figured caused the problem due to the anti-estrogen effect.
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I also use to have urgent dashes to the toilet in the middle of the night. It was pretty awful not knowing if I was going to wake up in time to get there or just poop the bed, which would have been horrifying for me. As I stated in an earlier post, I started on Metamucil twice a day around March and have pretty much gotten my sudden diarrhea problem under control. I still occasionally have issues, but it's pretty rare now and I kind of know when it might be a problem ahead of time which prompts me to take an Imodium beforehand. Now after I go in the morning I'm pretty good for the rest of the day and am even able to eat vegetables again. But I also wear a pantiliner everyday and have extras plus wipes in my purse just in case.
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Rene- I started the metamucil 2x/day a couple days ago and I’m continuing on it now. It does seem to be making quite a difference although not quite as dramatic as yours. But it has definitely changed my bowel habits. I don’t have the same urgency to go and I don’t go nearly as frequently during the day. And it’s actually soft stool now instead of exceptionally watery diarrhea. I may even go to 3x/day with the Metamucil but will wait and see.
Sorry for being so graphic folks, but it’s something we’re all dealing with and it’s important to learn how to deal with it so we can stay on and tolerate this medication.
I will add that when I was on the 150 mg 2x/day, it was just way too toxic. There was nothing I could do that would control the diarrhea. I was on maximal doses of the modem and Imodium and I still could not get it under control. That was no way to live and I don’t think I could have. I was getting dehydrated, lost a lot of weight in a very short period of time. At that time, I had to take an immediate drug holiday, and started again on the 100 mg 2x/day, which was much more tolerable from the start, but I still had issues with diarrhea. Not uncontrollable, but having the urgency and having To go sometimes quite frequently during the day. Rene had recommended trying Metamucil as it works so well for her, and I’m definitely seeing a benefit. I’m hoping over the next couple days my bowel habits become even more regular and normal.
For those of you on the high dose of 150 mg 2x/day, if you cannot control the diarrhea, please consider your QOL and talking to your MO about reducing the dose to 100 mg 2x/day. It is an FDA-approved and efficacious dose as described in the package insert for verzenio.
Also, I highly recommend having a toilet seat bidet installed! Very useful!!! Pretty easy to install and not that expensive
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My bidet seat has been a real help!
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Hi Hope and Gratitude, any improvement is welcome I'm sure. One other thing I remember doing before I had my D under control was to make sure I ate white rice daily. Usually in the evening. I'm not sure if it did anything, but it didn't hurt that's for sure.
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I have a question for anyone taking Verzenio and or Faslodex. Has anyone had any changes in their fingernails? I'm having weird fingernail issues lately and I'm trying to figure out if it's due to the medication or something else. My right hand is worse than the left, but my nails kind of look a bit like they did when I was receiving chemo.
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Rene- yes, the rice is a good idea and I had been eating that frequently. Good to get back to. I really should not complain because my diet is pretty varied, so I am lucky to be able to tolerate some diversity in diet and the Metamucil hopefully lets me keep doing that. There are some things I cannot eat and avoid and some that I should be avoiding if I want to keep this under control. Smarter eating going forward.
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So funny we are talking about this! Perhaps we should start our own thread on our bowels and movements or lack of!
Without going back, I see where someone was going on or is on 200mg. I'm certain I could not tolerate that, and if I can't get this "D" under control, I will go back to 100 mg.
Rene, my nails are like that also, but they were when I was on Xeloda. I take one of my syringes and fill it with Organic Apple Cider Vinegar with the Mother and when ever I think of it, I squirt some under my nails that are affected. My big toes have it worse. And I did have one accident during the night that I was unaware of.
Ok, it was Atall, not on 200 mg, but being lowered to ....... OMG. I can't imagine!
I don't go out much, so no worries about being out and about. We only go out every 2-3 weeks due to Covid. We live on 80 acres off grid and anything is at least an hour away.
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ReneV, my nails are terrible! They are so thin and shredding, and one nail is concave. Lost a toenail that has not grown back. They don't hurt, but they surely are ugly. Odd side effects!
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Ditto on the terrible nails. They are so short and ragged as they keep splitting. And my thumb nails are very ridged. Sigh...
It’s interesting how the gut issues vary. I have never had the issue of going continuously through the day. Generally for me there are several trips to the bathroom in rapid succession and then, once I get to the watery diarrhea, I’m done. Thank goodness. But it does make it tricky to know how to treat it. I can go for several days with only cramping that amounts to nothing and then will have “events” several days in a row or every other day.
It has definitely become more frequent. For me the bigger issue is the cramping. I have low level discomfort most of the time with severe cramps at various times throughout most days. I notice they particularly come on after eating and when I walk/exercise.
Isn’t Verzenio fun! I started at 200 mg bid but couldn’t hack it. Dropped to 150 mg bid then 200 mg once a day and now 150 mg once a day (last drop due to kidney numbers). Not keen to drop any lower.
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hey Rene’. I thought I posted a response to your post about the nails, but I see it didn’t come through. I had something similar happened several months ago. It coincided with the start of lockdown, me no longer having my nails done professionally, and also me starting on Faslodex and Xgeva at the beginning of April. My nails were very similar in appearance and I wasn’t sure what was happening. Whether it was the medications, too much hand sanitizer, no clue. Anyway I started using this stuff diligently for 2 to 3 months and eventually my nails grew out to where they are now looking normal. I had to keep filing them down to nothing until I finally hit some healthy nail after a couple months. They are still much thinner than they ever were, although they were never very strong. I had to just keep filing and use this stuff and eventually things were pretty much back to normal. My MO also said I could have tried to use the Burts bees cuticle repair? She said it’s awesome stuff and the key to getting the nails back to normal is keeping the cuticles healthy and moist. So, some things to play with. I actually might start using it again. Nails on my feet aren’t so great
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Thanks H&G for the tip on what to use on my nails. That's definitely one of the weird side effects that is never listed anywhere so I thought it may have come from somewhere else. Oddly this nail situation started after we went into lockdown for Covid and I was doing a lot more cleaning, so I thought it had to do with one the cleaning products I was using. I'm going to try the creme your recommended and hopefully they will improve.
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