Abemaciclib Verzenio for Stage IV
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Have any of you taken Lomotil?
I'm on day 14 with V + Faslodex and the big D is a train wreck. I have left the house once in the past 10 days. I've heeded the Monarch-3 diarrhea protocol that Z posted in the OP of this thread. I found 4 mg of Imodium was too much for my system-- cramping, cactus stools, blood-- but 2 mg isn't enough to stem the raging tide.
Alas, I have not found the magic formula yet. I have major work events next week and I CANNOT risk this hitting me while I am giving a public talk.
Nurse called in Lomotil this afternoon. Anybody tried this?
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mzr119
I feel like my chest tumor is going away, even Mo was stunned! Hopefully a PET later in May , will confirm that liver is getting clear as well.good to know 100 works too! May I ask what are you doing for maintenance? I mean do u take anything to keep yourself in NEAD?
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Ailurophile- I’m so sorry! I buy these by the case at Costco. My dose was reduced to 100mg almost 3 months ago and I am doing much better. I still have diarrhea, but not near as often. MO says that efficacy is not decreased with lower dose.
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Agree, sometimes Imodium wreaks havoc. Before reducing V dose and when I needed the Imodium, I found that taking one half of a pill at a time helped slow things down. Now, I don’t need it very often, but after a terrible experience on a road trip, I will now premedicate with Imodium about an hour before departure!
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Lulubee - I got a Rx for lomotil, but after the Imodium put a halt on any outage, I was too scared to ever try it! It is much stronger. I’m trying to get in the habit of trying metamucil every day
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catching up on replying. i have been overwhelmed with research (more stressing about it than getting any done), and saddened by recent and impending deaths in the cancer community.
thanks, cure_ious, for your scientific perspective. always appreciated!
daniel: i find jane a bit control-freaky also, but i also see where she's coming from. she believes in her approach and wants people to go for it before it's too late. funny enough, it's not the dewormers that freak me out--they tend to be low in side effects, and in my oversimplifying mind, i am wondering whether they may actually be synergistic with palbo, etc., since they increase tgf-beta--it's the statins and antibiotics i am recoiling from, because of their systemic side effects. but, yes, we are dealing with cancer here, so in that context, my fears (weight gain, premature aging) are irrational. and, yes, as chico points out, statins have been shown to have very solid anticancer activity (i have known this for 5 or so years since my cousin did his pharmacology-phd thesis on the subjet). chico, please do let us know about your scan!
for now, i bumped verzenio up to 200mg (have been on that dose for a week and no side effects; it seems like side effects cease for some women after a year), and added 1 g metformin. i should probably throw in an NSAID since i do have that pi3k mutation.
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Hi Luce...I’ve been meaning to ask about the NSAIDS. Is one kind better than another? ...and dosing? I will bring this up at MO soon....and I’m curious about Metformin.i do not know my pi3k status
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sorry, i don't know enough about NSAIDs right now. i forgot.i am looking at too many meds. i am tired. there are FB groups (and maybe on here, too?), i'll let you know when /if i figure something out. but i am in no position to give advice.
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Girl, no worries! Take care and I always appreciate your input
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i know some people in some of these repurposed drug fb groups use flarin, which is specially-coated ibuprofin and not available in the US, i think. etodolac gets mentioned.
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Hi!
I am on the same combination of medicine as you and the same dose. I have been on it for 5 weeks now and the side effects have gotten MUCH more tolerable. Just wanted to share that input!
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Sorry to intrude on this thread but as a user of one of this family of meds, Ibrance I am happy to report that after a mri and ct scan I continue to be stable. I am now starting cycle 33 of I/L plus Denosumab and statins.
I do hope that Verzenio works as well and at least as long for you all.
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hi Chico - you are not an intruder at all. We are all in this hot mess together! I post on the Ibrance thread too sometimes....that is terrific news on your scans! Do you have high cholesterol, or are you taking statins for breast cancer?
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Hi Chloe! I am glad you are here too. This thread is kinda quiet compared to Ibrance. Maybe we can get it going again 🙂 Thinking of Z, who started this conversation/thread.....Peace Z
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Hi Chemokase. My Onc recommended the statins - see conversation with Luce above - I don’t have high cholesterol. At this stage I don’t feel I want to add the whole COC protocol but with very extensive bone mets and arthritis I already experience pain so can tolerate the extra joint and muscle aches that letrozole & statins layer on. I try not to take pain killers and lead an active and normal life.
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I thought I'd put in my two sense about Verzenio.. I hate that drug! I've tried twice, 1st at 150 mg. Lasted not even a month. major diarrhea, made my pain in my back worse, messed with my emotion/mood, messed with my sleep, hot flashes at times 20 minutes apart, complete loss of appetite, weight loss. 2nd lowered to 100 mg, lasted on it this time 1 and 2/3 month. same symptoms just took a little longer to appear. took my last dose yesterday and will find out what's next at my next apt. the 17th.
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Well golly, that was encouraging. LOL.
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The first two months were miserable for me also: grade 4 diarrhea and lack of appetite. For me, lowering the dose and sticking with it was totally worth it: the diarrhea became bearable and my appetite normalized.
I doubt Verzenio causes hot flashes. I also am not aware of any mechanism by which it would make hot flashes from antihormone therapy worse. But I suppose it’s possible.
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Thanks for sharing your experience, Kaciee! We're so sorry you've struggled on this drug, we know how difficult managing the side effects of medication can be.
The Mods
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sorry to hear of bad side effects from verzenio for some
I have been lucky and really no side effects for me, so happy to be off some of the other meds ffor now
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I officially started my second cycle of Abemaciclib/verzenio on April 3rd! I was so sick that I Can't believe I feel normal again! Side effects which started at the end of second week, are manageable now .I still have to use the restroom 3-4 times a day but it's not horrible like before. The worst part for me was hemorrhoids that was caused by my awful all day diarrhea. My chest tumor is going away and my oncologist cant find it by touch any more.( I hope my liver mets are vanishing too) The only remaining side effect right now is HEARTBURN . What do you do to take care of it? Any natural solution instead of adding more pills? I am already drinkinking lots of ginger tea and mint tea . It helps but not completely
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i have no advice for heartburn other than the home remedies you already use, but mine didn't last long. my oncologist had never heard of it as a side effect, but i was on verzenio pretty early. i am wondering if it's caused by early menopause rather than verzenio, actually. in your case, from ovary removal; in mine, from chemo destroying my ovarian reserve. in any case, while it worried me, it went away fast. i hope it does for you also.
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I do get heartburn from the Ibrance, but maybe because I'm on the high level? I take Gaviscon, which seems like a super-Tums...
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menopause affects the digestive system! It's TRUE! I just googled it. Never knew this!
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Since many of us need a calcium supplement anyway for bone health, why not chew a couple generic Tums to neutralize stomach acid? I take vitamin D for Ca++ absorption and keep ranitidine/Zantac on hand to use as needed. Watching diet helps some too. Even carbonated beverages seem to bother me now...
Well past menopause, my heartburn issues started after being on V for a month. However I was also getting radiation to my cervical spine which affected my esophagus. No way did I want further irritation from gastric reflux.
I'm still having good results with two FiberCon tablets daily to control the loose stool.
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vlnrph Tums has never worked for me but that is a good idea for the sake of calcium
Cure-ious if it is stronger than Tums I will try it. Thanks for recommendation
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Pepcid Complete helps me with heartburn
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Thank you Chemokaze
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for those who are interested in studies:
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Thanks Luce! It’s kind of over my head at this time. I’m just tired after work...
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