Abemaciclib Verzenio for Stage IV
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Hi Ladies,
I am off of Verzenio (and Fasladex) which makes me very happy. I learned to manage the diarrhea. The fatigue was the worst for me. Plus after about 4 months it seemed not to be working. I'm on Xeloda now and am hoping and praying that it works because I feel great. Minor SEs and I"m on my 4th cycle.
My reason for this post is that i have 6 weeks of Verzenio that has never been opened. I know it's outrageously expensive, so if anyone can use it I would be happy to send it to them. Hope this isn't illegal.
Karen
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Hi pijim,
When i was on Verzenio I took "Imodium Multi-Symptom Relief". It helped with the stomach stuff. I managed the diahrrea, but the fatigue, no appetite was what did me in. Also it seemed like it was not going to keep working. I"m on Xeloda now with all most SEs.
The main reason I'm visiting here is that I have 6 week packages of 100 Verzenio unopened. I know how expensive it is so if someone on this thread could use it please let me know and we will figure out how to get it to you.
Karen
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I'd happily take the packages off your hands but I'm taking 150 for the moment.
The constellation of symptoms I reported to my MO on Monday were:
(1) War in my intestines between Verzenio and Immodium. Noises and pains oh my.
(2) Loss of appetite. Turns out to be Immodium.
(3) Puffiness & bloating. This is actually due to Faslodex. I had the same in the first few weeks last time. Mild diuretics not helping but I may just live with it.
(4) Decreased urine flow. As if something is pressing on my urethra. Worse in the morning. Anyone have a clue what that is? Hasn't gotten better with either diuretic or less drug.
So I've just stopped taking Immodium. (I'd been taking one per day) It's been three days and the diarrhea hasn't come back but I'm keeping an eye out. Meantime the appetite issue and war have gone away. Maybe I can get away with taking Immodium either once every few days or if I have to take it -- just before bedtime to avoid the appetite issue.
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Karen - I’m on 150 also. Possibly your cancer center can give them to someone who can use them. Wishing you well on Xeloda.
I am at one month point. Diahrrea has been manageable. I take two Imodium when it starts and two again when another loose movement follows or if I still feel the “gurgles.” Plus a dose of Pepto. That usually keeps me good for a couple days, then starts over again.
My appetite has improved. Enjoying spicy Chinese again. :-) That has also made me feel better than the first couple of weeks. Blood work good enough to stay on 150 dose. TM’s at day 14 were higher than previous. Drop,baby!
Pajim - I noticed I had less urine also, but I think in my case, I was really drinking a lot less than normal because of the stomach issues. I’m noticing now that I’m drinking more again, I’m going more. You’re probably already watching to be sure you’re not dehydrating. Hope it improves for you and you are feeling better soon.
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I'm now a month in and have figured out the diarrhea/Immodium issue. At least for me. I'm guessing that every woman needs to calibrate. I take one Immodium just before bedtime every three or four days.
That stops things up for 36-48 hours. Then I get bowel movements every 12 hours, then every 6 hours after which it's time to take Immodium again. Sort of like Moissy is doing, just a little less.
The decreased urine flow hasn't gone away. It's bad in the morning and gets better the rest of the day. No one seems too concerned about it so long as I'm not actually retaining urine (like the guys with prostate problems. . .)
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Pajim, I know what you mean about the decreased urine. I was noticing this myself. My labs 3 weeks ago showed my creatinine is creeping upward at 1.2, which is the high end of normal and GFR decreased to 51, less is worse because the low end of normal is 60. So, since I was really struggling with lack of appetite and crazy diarrhea in the beginning i started having a high protein beverage every day, and I have stopped that. Verzenio can have renal side effects, so now I avoid ibuprofen too.
I really try to stay hydrated, but you knowhow it goes, maybe not so much hydration on some days, but seeing my labs change I am making sure I stay hydrated. I get new labs in just over a week when I get my Faslodex & Zometa.....will further discuss with MO as well.
I also want to ask about having chapped lips all of the time! LOL
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Chemokaze, the appetite problems are most likely from the Immodium. I now take mine just before bedtime and it's helped with the appetite.
My onc just shrugged at the decreased urine flow so I'd be really interested in what yours says.
I'm not having trouble with chapped lips but that feels like a hydration problem too. Either that or a sunburn.
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Why should the Ibrance Dancers have all the fun when we could be doing the:
Verzenio Tango!
Verzenio Mashed Potato!
Verzenio Mambo!
Verzenio Disco!
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I am anxiously waiting for PET and MRI brain results so I can break out into the Verzenio Tango with my DH
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Crossing my fingers for you!!
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Great News - NEAD!
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chemokaze: good for you! it's a great drug, verzenio. my tumor markers went up last month and i thought i'd have to go off it and try something else (although there's nothing else i'd be happy to try, and i have done my research). but at my next blood draw four weeks later, they went slightly down again. so looks like it's still working, after all. my oncologist cannot explain it, though. here is what i had done differently in august: i went on a 84-hour water only fast. fasting is starting to be considered helpful even by mainstream oncology. (see dr. valter longo's work, for example.) i asked my oncologist whether i ought to discontinue verzenio during the fast, or whether he thought missing six doses could trigger a rebound. he said to stop it since GI side-effects (i still get diarrhea once or twice a week or so), fasting, and heat-wave might not mix well. (i was happy to since water-only fasting should ideally not include anything that needs to be metabolized.) anyway, i felt terrible after about a day and a half, almost like i had before verzenio kicked in for me: my breathing became very labored (i am operating on mostly one compromised lung at the best of times) and i, exceedingly weak. and i am metabolically flexible, so my body should be able to run off its reserves fairly easily. so, anyway, if i fast again while on verzenio, i'll keep taking it (in case cancer does rebound during breaks), and i may do a modified fast only if over 24 hours.
i played around more with melatonin (i feared for a while that maybe the antioxidant effect of melatonin might interfere with verzenio), and taking 5 mg or less does not seem to have an impact on verzenio. i haven't tried higher doses.
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Chemokaze, woo hoo! Congratulations!!!
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Thank you Pajim and Luce :-)
Wow, Luce....I have heard about fasting and about Dr. Longo, but have not yet researched it. Sometimes i get tired of reading about cancer or really i just get overloaded. I'll have to ask my med/onc.
There was something new on PET scan that has never shown up before: esophagitis. I'm certain it has to be the Verzenio....and I will ask about this Monday.
The inside of my mouth feels raw most of the time and my lips are chapped all of the time. I still struggle sometimes with the diarrhea like especially today. I think certain foods trigger a blast off! (Multiple!)And im thinking the immodium helps the diarrhea some, but i feel worse after taking it.
I am curious about labs on Monday....concern for renal side effects as my creatinine is creeping up and my GFR decreased last month. Maybe i need the lower dose of Verzenio - dont know. WBCs are low, but not bad.
I dont want to complain because im really grateful for this drug....ive been on it since July and wonder if how I ffel now is the way it’s gonna be, or will S/E lessen
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Luce - I’m glad you are back. I appreciate your input and I learn so much from you
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I am on Day 1 of Verzenio, 150 mg. 2x a day. I have lobular invasive carcinoma, Stage IV, which has metastasized to my bones and chest wall. I started the Faslodex last week, and will soon be on Zometa. I appreciate the tips for side effects from the Verzenio (which sound like the diarrhea will be coming soon! )
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I start on Verzenio 200 mg 2x/day any day now. I'm wondering if my digestion will be close to normal since I suffer from constipation due to pain meds. Any thoughts? It probably doesn't work this way but it would be nice to have normal bowel movements.
Amy
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Hi klubarb, Amy, welcome! The label says that the average time to the start of diarrhea is 8 days. I, the most constipated person in the world, lasted nine.
It took a while to figure out how to manage it. 7 weeks in I'm down to about one Immodium a week. Started as once a day, which was too much, than every third day but lo didn't need it last time. Not that I've had a 'normal' bowel movement in five weeks but so long as I don't get the 'urge' I'm happy.
FYI Immodium causes it's own problems. For one thing it's an appetite suppressant. We won't mention the gas pains. If you need to take a lot of it I suggest Gas-Ex too. If needed I take the Immodium just before bedtime.
Amy, since you're taking pain meds, they may stand in for Immodium. With this drug you definitely need something to slow down the bowel. You might become regular. It's certainly something to wish for!
Edited to add: P.S. I also notice I'm a little more tired than usual but otherwise I notice zero effects of this plus Faslodex.
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We too welcome you klubarb, though sorry you had to join us. Yes, indeed, many experience this side-effect. That said, you'll see others who say that wasn't the case for them. Please keep us posted, and we wish the very best for you as you start with these meds!
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Thank you for your warm welcome and your suggestions. Day 3 doing ok.
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Happy dance here! I went in to see MO today. Tumor markers are flat. They had been flying up so this is an advance.
I had run through all the hormonals a year ago and took Xeloda for a year. Asked to try hormonals again -- we figured there was about a 1/3 chance of working (according to the verzenio trials).
Had enough bad luck that I'm thrilled to [maybe] be in the 1 rather than the 2. At any rate, no call for scans and we'll see the trend next month. Now I can buy the tickets for California in December and be pretty sure I can go. Whee!
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Awesome Pajim! So happy to hear your good news
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Terrific, Pajim!!! Maybe add Disneyland for Fireworks & Fantasia?!
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Hey Ladies, I am on day 5 of Verzenio now and had some diarrhea yesterday. Took 2 Immodium and that seemed to work. Thanks for the warning about the GAS!! Today I can't seem to get out of bed, although I do have a cold, but that is unusual for me, even with a cold. Has anyone experienced this extreme fatigue and a little dizziness? Paijim, hope you have a great trip to California. That is where I live, in San Francisco!
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Klubarb - I did have a little dizziness for a few days at first and my BP was also lower than normal at first, which can cause lightheadedness. I tried drinking more fluids and the dizziness has since gone away. Good luck
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I'll join klubarb as a new Verzenio user. On this site in the past I would usually read thru an entire thread before posting since I didn't want to repeat questions but at this point I've only looked back about three pages.
The lengthy discussion reproduced at the beginning of this topic by our original poster here has been most helpful.
For some reason, the prospect of diarrhea has been very worrisome to me. Perhaps that apprehension contributed to the 4am loose stool I had after only 3 doses! Another bout occurred about 12 hours later which is when I took a 'priming' dose of Pepto Bismol. Output was not real watery so I have not notified the onc office yet.
Sources suggest that bowel movements only become irregular after about a week due to the med (I started my course of therapy in the evening two days ago) - is this borne out by all of your collective experiences?
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Klubarb, sounds like you're a bit dehydrated. Diarrhea can do that. i'm a little more tired on this drug than I have been but it could also be that i'm not sleeping as well. Weekends I take a nap. Weekdays I try not to have meetings right after lunch so it doesn't look like I'm falling asleep. So long as i'm busy I stay awake.
vlnrph, welcome! For me, the most constipated person in the world, I lasted 9 days before the first loose stool. Diarrhea was my friend for a month but has since slacked off. It's not that I have normal stools -- I don't -- but I "go" much less often.
When I first started the drug my pharmacy called to give advice. Their suggestion was. . .at the first sign of diarrhea take two Immodium. Then one Immodium every 12 hours. After a month taper off.
That did not work for me. Waaayy too much Immodium. There was a war in my intestines. But for those who have more normal bowel movements than I it might work. What I did do was take one, then one 12 hours later. Then stopped. Three days later bowel movements. When they got bad, another Immodium. Now I'm down to one about every 3-4 days.
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High Fives! Pajim....so glad to hear your news
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I did not have GI tract issues before Verzenio, but now I have developed esophagitis, which even showed on PET scan a few weeks ago...plus the back of mouth and on down is red, so I will go see GI doctor for first time ever. I have never been scoped anywhere. My med/onc wants me to get help with this because she does not want to lower my dose.
My labs were all good on Monday. WBCs a little low....kidney function was fine. I’m really trying to stay hydrated. I bought 2 cheap quart size glass bottles and everyday I fill them with water and leave them out where I can see them....it helps me to remember to drink at least that much and then some every day...luckily no restrictions on that for me.
I think I’m on week 9 of Verzenio and the diarrhea just varies, but definitely improving....but then worsens if I eat something that triggers it
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Just when things are seeming better, the diarrhea is back with avengance - WTH?!! I see GI MD 10/30. My GI tract is chapped from my lips down to my a-hole! Just venting out the mouth! LO
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