Hi, I have been on Verzenio 150 mg bid along with Anastrozole 1 mg for 8 months. I take 2 immodium daily for the diarrhea. I am not able to predict when the diarrhea will hit even after 8 months and despite the Immodium bid. Any pointers and tips to deal with the cramps and diarrhea are much appreciated.
Thank you,
Penny
I take Piqray. It’s 1:45 in the morning and I new know when the poops hit. I get them up to 8 times a day and have pain always. I take two Tylenol 650 and two oxycodone when needed. I have lidocaine gel, hemorrhoidal gel an have a heating pad several places in my home. Before I poop I take Vaseline and insert a bit in my rectum. It makes the poop easier to come out and keeps me from having rectal fissures. Not fun. I have MBC in my rectum and stomach lining. I had a gastrojujunostomy four years ago and should have been dead. But by the grace of the medical professionals I can advise you. Watch what you eat. Sourdough bread releases sugars slower than regular bread. I have type 2 diabetes from Piqray, but hey, I’m alive to complain. I am 72 years young and Keep going.
Best to you. Everyone’s plumbing is different. Hope that helps. Reenie in Rochester NY
Thank you Reenie! I appreciate your help. I like the idea of the gel and a heating pad.
Hello Metastaic125,
Been on Verzenio 150mg since 3/2021, and 1 mg of anastrozole also, since 1/2020. I got some disposable undies in the house after I pooped my bed the first week. It did get much better though. I did not have cramps, just a LOT of diarrhea. Hang in there, okay!
Best,
Colleen
Colleen, Thank you for your help. Love the disposable undies 😊
Metastatic123,
You are very welcome. I hope that you feel well on Verzenio soon.
Best,
Colleen
Hi Penny. I've been on those same meds since January and can certainly relate to the diarrhea issues - constant & debilitating! Immodium didn't do much for me, although it did help lessen the cramping that was accompanying the diarrhea. That along with my decreased appetite had me losing over 10 pounds in the first 3 months in the meds (not to mention the dehydration) ! My doc put me on Lomotil, and it has made a big difference. I do still have some episodes of diarrhea (which unfortunately can come on very suddenly), but not nearly as many and not accompanied by the horrendous cramps. At least I can leave the house now & go places, as long as I know where a bathroom is. Hope this helps. Wishing the best ❤
Susan
Susan, thanks for your help. I will ask my oncologist for Lomotil.
I don't know about med caused diarrhea , but Kaopectat has been my go to OTC med for diarrhea. I've got the opposite--constipated. I've gotta get new meds for myself. I hope you find something that helps. Ask your onc nurses what they recommend. Let us know if you get info on somethi g that works well.
Thank you for your help! I will let everyone know what the nurses recommend. At this point all they said was Immodium.
My onc gave racécadotril 100 mg. I live in France and I don't know if you have this medecine but you could ask.
Take care
Thank you for responding! I will look that up and ask my oncologist.
I am on Verzenio (100mgs. twice a day and Tamoixfen. 5mgs. twice a day. I am supplied with Loperamede and if I take it regularly, At the first sign of a loose stool I take two 2mgs. and then one after that intermittenly. Otherwise I would have cramping and sudden diarrhea. It works very well. I am 82, Hope this helps.
Cheers, June S.
June, thank you for your help! The Loperamide helps me a bit for sure. I will consider taking it more often and see how it works.
I take it on a fairly regular program. At the first sign of loose stool I take two tablets followed the next day by 1 tablet. and then wait a few days before taking it again. I find I only have to take it occasionally but I have a fairly slow moving digestive system and only have a BM every third day. Or maybe it has settled down somewhat and is not causing the problems the Verzenio did before.
Cheers, June S.
I had cramping and diahrea over the first months and then it settled. Actually tolerating Verzenio well. I wonder if I am rare?
Thank you for responding! That’s great that you are tolerating the Verzenio. I have heard that from others too.
It worked well for me also but I had my onco drop me from 150 to 100 and then to 50 mgs and I was also getting the falsodex injections. It was such a relief bc no more diarrhea issues, fatigue. I was on that combo for 3 1/2 years but she needed to take me off bc it now spread to my liver. I miss it.
It made me feel normal. Having a bit of major fatigue and nausea with the afinitor so I guess I was spoiled by the Verzenio. Glad it is working well for you.
I am on verzenio 100mg twice a day and letrizole once a day. I deal with constipation and diarrhea all the time. If I have a bout of diarrhea but take the prescribed dose of Imodium I get constipated. I went six days with no BM so I had to take a laxative and a stool softener. I can’t win because it’s either I have diarrhea or I’m constipated and neither one is fun. There is no warning for the diarrhea, when it hits, I’d better be near a bathroom. I started out wearing the cutsie diapers when leaving the house but now I’ve decided to just wear a very large pad for security. I have a new appreciation for people who suffer with crohn’s disease.
Thank you for your help! Yes, got to keep the disposable underwear and pads handy. 🙁
I was on exactly that: 150 mg Verzenio twice a day and anastrozole once a day. I couldn't take the 300 mg daily of Verzenio: I had diarrhea and would take Immodium (2 right away, as advised) and that made me constipated. Immediately after taking the Immodium, I would get stomach cramps. For that I took Bentyl. That gave me nausea, and I took prochlorperazine... It was too much. The Bentyl knocks me out.
I went down to 100 mg Verzenio after a month (plus a two week break to get back to feeling well and stabilize weight). I have all the above, but much less. I can do this.
I had been asking for something for the stomach cramps -- real muscle cramping in abdomen -- but no one in oncology could think of anything. Then the specialty pharmacist suggested Bentyl, used for irritable bowel syndrome. The oncology people all went, "of course." I find the cramps the hardest thing to take. Now when I take Immodium, I cut the dose in half instead of doubling down. Less constipation but it controls the diarrhea. I never had diarrhea so badly that I was incontinent. I could wait until I got home, but mostly I am at home. I don't go out until I know I am done with "the trots." I also have prescription meds for diarrhea, which I would use if it was bad, but I find Immodium sufficient. The prescription anti-diarrheal is a generic for lomotil.
Tammy, thank you for your help. I have also considered lowering the dose. I agree, cramps are the worst part of it.
I’ve been on Verzenio 150 mg 2X a day for two months. I was controlling the diarrhea with Imodium until I got terrible wind or gas. After that it started to go downhill. I had no appetite and was vomiting as well as having diarrhea. It got to the point I vomited after drinking water. My husband thought I was a goner. I stopped taking it and my Onc said to wait until my GI settles and I gain some weight and then I’ll try at a reduced dose. Chris
Chris, thank you for responding! A lower dose is a good idea. You can’t deal with such extreme side effects. Hope you feel better on the lower dose.
Hi Penny!I have had IBS, (diarrhea kind, not constipation), my entire adult life and being on my cancer meds have really thrown it for a loop! It really sucks being doubled over in pain from cramps and being chained to a toilet at all times! My doctor prescribes Bentyl for me. It definitely works on stomach cramps. It is an anti-spasmodic -so if the bowel isn’t spazzing, it’s not causing you cramps. When my IBS was really bad, I was taking 4 Bentyl a day, a half hour to an hour before a meal and then one at bedtime. I was also taking anywhere between 2 to 4 Imodium every day. As time has gone on I have been able to scale back my Imodium and I now take half of a tablet to one whole tablet every other day for preventative measures. I have also scaled back my Bentyl to twice a day, before lunch and dinner. Lomotil is also excellent to try. My bowel is under control now, but I have “episodes” ever so often, and they come on without any warning. Wherever I go the first thing I do is find out where the bathrooms are. As other ladies have stated, I where extra pads or disposable undies, just in case I can’t make it to the bathroom in time. And, just in case, I also carry in my purse a pair of sweatpants, an extra pair of underwear, a package of baby wipes and a roll of toilet paper -My insurance policy! 🤣 I hope you get relief soon! Liz
Liz, thank you for your response! I am going to start doing that, change of clothes and toilet paper and wipes, what a great idea in case of an accident. I have also started looking for bathrooms wherever I go. Take care.
I started out with Ibrance but I had major issues with the week off the drug. So bad so that only lasted three months. Then my onco put me on Verzenio (150 mgs.) and I was already getting the falsodex injections.
I could not handle the bm that would just come with no warning so I stopped taking it after two weeks. She lowered me to 100 mgs. and I had the same problems and again I stopped after two weeks. I said there is no point in me taking a med that I have to worry when walking about having an accident. What is the point then? She was a bit annoyed bc I complained and she said well the lowest dosage I can put you on is 50 mg.
And that made all the difference. I no longer felt tired, no longer any any diarrhea issues. I was on the 50 mg. and the falsodex for just about 3 and 1/2 years. But unfortunately, it spread to my liver and continued to grow, so she took me off that treatment. I was upset bc I barely felt like I was on any meds.
So now on tamoxifen and afinitor (5 mg.). It has been about two months now and it appears from the bloodwork that it may not be working. So they moved up my scan five weeks and I go on the 23rd. I am sure that it has grown more bc the bloodwork appears to show it is not working.
But as my onco said, I had a really good run with the verzenio and injections and I did. So depending on how you feel, maybe you can ask your onco if it is possible to lower your dosage.
Thank you for the information, I am glad you had 3.5 years on it. My kids and husband want me to lower the dose. My oncologist is fine with trying 100mg bid. Will think about it. Thank you and I hope the scan on the 23rd is a good one.
Verzenio/low ANC/side effects
ugh!! Another Ibrance side effect…. Dry nose
For those of you with horrible side effects on Ibrance!
Enhertu side effect: pneumonitis (lung inflammation)
Ibrance side effects
