Abemaciclib Verzenio for Stage IV
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My wife got back her first tumor markers after switching from palbo to abemaciclib. She had her tumor markers last tested 39 days ago. Both of her tumor markers have continued to increase, but not at the same rate as before. She has only been on abemaciclib for 30 days now. She was on palbo for almost 2 weeks after her last tumor marker test, before switching to abemaciclib. The prior 30 days her tumor markers went up 50 plus percent during that 30 day interval. Now, they have risen again, but cea only slightly (5%), and ca-15 around 23 percent. It's too early to draw any conclusions, but if her tumor markers continued to rise at the old rate for the 14 days she continued on palbo, then very little of the progression was on abemaciclib. Have to wait another 30 days and repeat to get a better picture.
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Husband...praying that this works well and for a long time for you wife!!!
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Husband11 - My tumor markers quadrupled the first month of treatment on Verzenio (1st line tx), then only slightly dropped the second month, then a bigger drop in the third month. More importantly, my 3-month scan showed marked reduction in tumor size. Maybe the TM spike was tumor flare, or maybe the Verzenio is slow-starting? Either way, I hope your wife's tumor markers change direction and/or you can verify improvement on a scan.
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Husband, I think it sounds like the tide may be turning. Hoping for good results on the next set of TMs.
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I am entering week 4 on 150mg Verenzio 2xdaily with 1gm Colestipol and absolutely no diarrhea.
I am having such good luck with it I am a little nervous to stop the colestipol and try metamucil. I have to stop the Verenzio in a few weeks for dental surgery - I may try starting it back up with the metamucil method.
I have had no Verenzio side affects, so far. I do have something going on with my throat. That feeling that I get when - oh no, A cold is starting feeling in my throat has been with me now for 5 days. Almost like I have something stuck in my throat. It is not 'sore', just a 'full' feeling.
'Sore throat' is side affect with verenzio but like I said, it is not sore, just 'full'. Late this afternoon I am suppose to give my onco office a call with a status report on the Verenzio so my onco can decide if she is going to continue me on this drug, I think I need to mention this throat thing.
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I'm now three months out from diagnosis and starting Verzenio and just got the PET/CT results from the 3-month scan. The Verzenio/AI seems to be a really good combo for me. Spine met - gone, collar bone met is smaller and the met in my hip is stable. The lung lymph node mets are much reduced in size. The lungs mets are reduced in size or stable. The left axillary met is half the size of three months ago.
Still quite a bit of diarrhea 1-4x in the morning and again in the evening plus tummy ache. But I'll take that for the benefits. I also have colitis so the tummy issues might not even be the Verzenio.
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lehrski - all great news at 3 months! Are you taking anything for the diarrhea? Please consider trying Metamucil. If ok for colitis. Game changer for me and others.
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aznetrook - definitely mention to your MO. I don’t believe I have heard anyone mention this side effect before. Does it make it hard to breathe or swallow? Is it generally temporary? Manageable? If it’s manageable I would certainly stay onverzenio awhile to see if it’s effective before making the jump to something else.
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Unfortunately, Metamucil causes colitis flare ups for me. The gastroenterologist prescribed a strong anti-diarrheal, but it makes me fall asleep. So for now, I just bring TP with me. I’m going to play around a bit with diet. My tummy was very happy for almost 3 days after the PET scan diet so maybe a keto diet might help.
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On a 1 week break from Verzenio as my neutrophils are low .95. But otherwise things are very stable and positive. Since being on Verzenio 100 mg twice a day I have been constipated! So I am taking metamucil as a laxative. So it seems Verzenio will either cause havoc with diarrhea but on lower dose can cause constipation.
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nnc - interesting! I dropped to 100 mg 2x/day and I would have to say, no, I was not constipated, not even close. I did not have the horrendous diarrhea I had on the higher dose, but it was still problematic. I take metamucil to control the diarrhea. Does a great job! Amazing stuff. Happy it's helping you too from a different angle
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Hello to Everyone
Just got my results back from blood test yesterday. All my numbers are perfect my Onc says!!! I’m so happy. Had to switch from kisqali to versenio because of liver enzymes and then my kidney numbers were climbing on versenio. Ugh. Well after this last test I guess I’m good to go on versenio. My diarrhea was awful but I started taking one Imodium pill in the morning and I was ok. These last two days I haven’t had to take any Imodium so maybe I’m finally over it. Guess I’ll wait and see. Good thoughts from me coming everyone’s way. Be strong and stay positive.
Kathy
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Kathy, Congrats! How long did it take for your numbers to improve after switching to Verzenio?
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Hi Kathy,
Great to hear that the numbers are looking much better. I also had wonky kidney numbers after starting on Verzenio. Apparently a speak in creatinine is a common side effect but it should level off pretty quickly. Mine kept climbing so we dropped the dose. That seemed to solve the problem although it still bounces around a bit.
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Hi All.
I'm following up on a comment that Goldie made about losing her hair. Have any others experienced this? I noticed a few weeks ago that my hair seemed to really be thinning on top. At the time I chalked it up to needing a hair cut (I have very fine hair and it doesn't respond well to the extra weight when it gets longer) but have since realized I am definitely losing more than normal. I end up with a lot of hair on my hands when I add gel, etc.
I don't have tons of hair so it will be noticeable if there is much thinning... Sigh.. This on top of the diarrhea continuing to ramp up. Geez...
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Sadiesservant - I seem to notice losing more hair, too. At first, I chalked it up to going off HRT and right onto anastrozole, but it's continuing...I can't believe what I lose in the shower and my hairbrush! So far, if still looks okay, but I'm worried. I wear it long now, but may have to reconsider a shorter style if it keeps thinning out.
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Oh dear, I'm sorry you guys. I have long hair and I comb it in the shower with conditioner in it, so much easier to comb it when I get out. I have lost probably half of my hair. Then when I dry it, if I run my fingers through it, more comes out and then through out the day. I have not taken an V in a couple of weeks, my treatment has changed as has the cancer. I'm her2+ now, so doing Herceptin and Perjeta.
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I was wondering if I was the only one struggling with hair loss. It's not been talked about a lot on the Stage IV threads that I can find and I stayed quiet because I don't know whether to attribute it to Verzenio or Exemestane or both. Since my cancer came back within a year of Taxotere/Cytoxan I wondered if that was part of it too. My hair came back as curly as it was but is now very very thin on top and I get clumps in the shower every morning and it comes out on my hands if I finger comb or work in oil or gel. Have any of you found anything that works? I haven't found a thread about beauty products or hair products on the boards and considered starting one. I have wasted a lot of money on different sprays and things to get it to grow back but nothing seems to help. I am even still without eyebrows and barely have eyelashes. I draw on my brows in the morning and do a light eyeliner to hide the fact that my lashes are missing. I swear, if it were just the pain and the management of mets I think I could manage well enough, but as awkward as it is to admit, the loss of my looks has been equally as hard and/or harder on my spirits. If my hair persists in getting thinner at the top I may just go super short and wear my hats again. What do you all do?
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Hi Emac,
I can’t help in terms of product or strategies I’m afraid. My hair is already quite short and fine so the thinning on top is starting to be a bit more noticeable. I gave up on mascara when I lost my lashes to Taxol. I don’t want to damage the ones that grew back!
I see mention of hair loss come into many threads. I guess in the grand scheme of things we have so much to contend with it does seem minor but I get it. Kind of one more indignity. (I remember being really annoyed that some of the first hairs that came back in the last time was on my upper lip! Really?)
Fortunately I am working from home now and it is hat season... harder to deal with in the summer
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Emac, I have no suggestions for product either, I guess we just have to deal with it.
My surprise is how much I'm losing and haven't had any V in weeks! I'm hoping it stops! But the new meds will probably do the same.
SS, I had to laugh at the first hair being on your lip. What's up with that, right!
I'm a country girl, but a vain one. Never go out without doing my hair and make up. Now at home, not so much. Plain Jane I am.
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I was losing hair at the beginning of my abemaciclib therapy over two years ago but thought then that the anti-estrogen effect of Faslodex may have been a factor. More recently, I have noticed that the follicles on my scalp seem to be sore. A strange sensation, not all the time however...
Lehrski, have you tried FiberCon for help with the colitis? It is not a psyllium product like Metamucil, the generic ingredient is calcium polycarbophil. I take two tablets daily to keep the Verzenio diarrhea under control. Good for constipation also. No prescription needed, it’s in the OTC laxative section.
nnc, there was a brief thread regarding low neutrophils earlier this fall. I’ll see about bumping it for you. My oncologist thought about a drug holiday for me in September when my number dropped to 0.96 but I said I would rather recheck in a couple weeks. I ate my dark chocolate and it bounced up.
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Thanks for the tip about dark chocolate vlnrph. Has anyone tried a topical saw palmetto preparation for hair loss? My wife is trying it. It has some reported effectiveness in androgen related hair loss, and I would think androgens would be increased in anyone taking an aromatase inhibitor, as that prevents the conversion of androgens to estrogen, and the more androgens you have, the more that can be converted to dht, which is the culprit in androgen related hair loss.
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Huband11
My numbers went down after my first four weeks on versenio. I guess I spoke too soon because I started back on Imodium. However, after a few days I get consolation and boy is that miserable! I’ve decided to just use Metamucil when needed. Husband 11 sure hope your wife has good results on her next TM. Keep us informed when you get a chance
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I've lost my hair from Taxol and then waited for it to grow back but it is a sad state of affairs, very thin sparse and bald at top and back of head. I guess the Verzenio might be a factor too. I bought a hair product from The Ordinary but have yet to use it so will give you an update when I see results or lack of. I also have lost lashes and eyebrows and tried castor oil but I am bad at daily application. I agree with others about ridiculousness of hair growing back in unwanted areas ; I have one hair on my chin yeesh. I also have one hair on one eyebrow hurrah!
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Hi, I am new to abemaciclib. However not new to CDK4-6. I have taken kisqali for 14 months together with faslodex. In October, PeT CT discovered two small mts in vertebra T9, T12. My original was single lession in T10 and ond liver which was succesfully resected three years ago. I had SBRT to the both lessions last week and this week I should start verzenio with letrozol. I know it is not typical schedual, still hope it will work for me. I had also liquid biopsy -Foundation One, but not much came out as compared to liver met analysis which indicated CDK4-6 as treatment options. I wish you best results with your treatments. Market
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Maaki - good luck on the verzenio and letrozole. Are they continuing you on faslodex? Are they adding xgeva? I was wondering if you had any additional liver mets or were they treated with success and no recurrence 3 years ago?
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Hi Hopeandgratitude and thank you. I am no longer geting faslodex, originally my MO wanted to give me Verzenio in monotherapy, but said that I did not have nosteroidal AI yet, so she gave me letrozole. My single liver met was discovered together with T10 met three and half years ago when I relapsed after almost four year from stage 1. It did not look typical on scans and somehow they did not want to biopsy it, so when it still grew little bit after changing treatment from tamoxifen to exemestan my MO sent me for surgery. I was very lucky they did laparoscopically three in one with my ovaries, liver and gall bladder. Since november 2017 my liver is clean no new mets, and after surgery I took exemestan single therapy for another year and half untill T10 met started to grow again. And yes I am taking exgeva, they changed it from zometa after progression into T9 and T12
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Hello to Everyone.
Hey I’m starting my second month with Versenio/Letrozole and for the second time in three weeks I’ve had terrible abdominal pain. Has anyone had to deal with this? I texted my onc but haven’t heard back. It seems to start for no reason. I did read that abdominal pain can be one side effect. Was wondering if anyone has had it and what they did for it. ( lower dose ?)
Kathy
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Hi Kathy,
Unfortunately, that's a pretty common side effect that usually precedes the diarrhea. It used to be pretty predictable for me. The severe cramping would start, becoming more frequent and severe then, within an hour I would have watery diarrhea.
I was lucky in that it was only once a week or less but that's changed for me over the last few months. Now it's more frequent and the cramping can come and go all day never getting to the diarrhea stage. Go figure?
Some of the ladies have had great success with Metamucil. It might be worth a try. Wishing you well as you navigate this.
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Hello ladies, what is metamucil? It is not available in my country. Is it psyllium? Fiber? If I understand right? This should be more a laxative than to prevent diarhoe? Thanks
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