Abemaciclib Verzenio for Stage IV
Comments
-
vlnrph - thanks for the information. I took 2 pills at lunchtime for 3 days, avoiding times when I was taking other meds per the label. By day 3 I had severe cramping and diarrhea. I will say thatI have had a problem with loose stool since starting verzenio (I don't even know what solid stool means anymore), which I was "managing" with both lomotil and immodium. The lomotil effectiveness seemed to be wearing off (taking twice per day) so I hoped to stopped that and try the fibercon, something more natural. Perhaps it's just not strong enough for me. Going to go back on lomotil at 3 or more times a day and see if that supplemented with immodium works. Otherwise back to the doctor. Maybe a lower dose of verzenio.
0 -
I have been taking fibercon daily since high school per doctor's orders to prevent IBS constipation. I wasn't aware it helps diarrhea. However, it is a bulk-forming, non-soluble fiber so it makes sense it would regulate the situation whether one has constipation or diarrhea. The other day, I spilled water on a pill that I must have dropped and it was left like that for a bit of time. When I came back to find the pill, it significantly expanded into a large spongy type substance. I was surprised how large it became and based on what I saw, gained a better understanding of how it must work. It doesn’t break down in the intestines. It just serves to push things through due to its bulk when things are moving too slowly (and possibly absorb excess fluid to slow things down when needed). It is super gentle. Just like fiber in the diet, it can help regulate bowel movements
0 -
Interesting observation JFL - your own inadvertent science experiment! Points out the importance of drinking enough water to get the FiberCon tablets all the way down and into your stomach.
For Hope & Gratitude: a dose reduction is a reasonable step. My bone mets are staying quiet on 100mg twice a day for 18 months now with no new areas of concern showing up.
0 -
thanks. Was considering dose reduction. Will have to see how my next scan goes in June. All good with liver mets for a year but then bone mets popped up. If faslodex and xgeva help control I will stay on verzenio a bit longer. It’s only been a year! I was really praying I could get 2-3 years from this one! But we don’t control these things....we just hope and pray for ourselves and each other
0 -
Hi all. Just had to put this out there and see if anyone might have a thought or advice. I have been on verzenio about 8 mos (palbo before that). Liver mets controlled (yay) but a couple bone mets popped up after a year on TX total (bummer). I am still on verzenio but switched to examestane and added faslodex and xgeva. Since starting the latter 2, I have had daily awful awful awful issues with diarrhea, that were pretty much under control before. Instead of the diarrhea getting better over time it has been getting worse and worse and its difficult for me to control even on 3 lomotil a day and 4 immodium. Really hard to go through this daily and I am losing weight too.....its that bad. I have a scan June 9 and if everything is still controlled, I will likely stay on the verzenio, but not sure I can, if this issue is from that. MO is sympathetic but not sure she gets how poor I feel. She says "its a dude effect of verzenio" and leaves it at that. I am going to tell her I want to try a dose reduction of verzenio if I do stay on, although I heard that that might help but obviously not a sure thing.Feeling upset and frustrated at this QOL right now.
0 -
Hi HopeandGratitude
I can’t recall what dose you are on but I would most definitely be looking at a dose reduction if I were you. I’m actually shocked that your MO is not suggesting this as the protocol calls for dose reductions if diarrhea is uncontrolled. I would search for the guidelines and present it to your MO if she balks.
I have had several dose reductions since starting on Verzenio. Initially I was at 200 mg twice per day but it was awful. I had zero quality of life. I had no taste, diarrhea and was nauseous even drinking water. As a result I was losing weight and finding it increasingly difficult to take in fluids or solid food. I realized pretty quickly that there was no way I could live like that so we dropped to 150 mg twice a day. That made a big difference but I was still battling nausea so we dropped even further to 200 mg once per day.
All was well until I noticed that my creatinine levels were climbing exponentially. Another dose reduction, now to 150 mg per day, brought it back to the high end of normal. I just had my latest scan and, while I have yet to see the full results, it sounds like all is well. I am still dealing with occasional diarrhea, some chest issues and problems with my mouth which I will discuss with my MO on Monday at my appointment.
The only thing that confuses me is that this has escalated since you started taking the two new drugs. I don’t think Faslodex will be the problem but wonder about the Exemestane. Might want to ask about a possible interaction as I don’t believe it was tested with Verzenio.
Hope you can get this under control!
0 -
Hope- verzenio is a stronger inhibitor than ibrance, so dose reduction should be fine- but also just adding in the faslodex might do the trick, because the failure may have come from the anti-estrogen side of the treatment, and the cancer may still be just as sensitive to ibrance as it was before
0 -
Thank you Sadiesservant for the insight. It is so appreciated. Good to know you are out there. Sorry you have to go through the experience too of course
, but happy verzenio and dose reductions seems to be working. I agree that there is some weird interaction here that has made things much worse. I will ask about the exemestane for sure and I will bring the label with me to push for a lower dose of verzenio if my scans look good. I may not be able to wait though....... Thank you again.0 -
Just popping on to report that my 6 month run on Verzenio ended in early April. It was keeping tiny specs in my lungs stable but I had a few millimeters of growth in one lung tumor and a cluster of lymph nodes that started to block my middle lobe airway. Wheezing and high pitch squeaking has been my norm on and off now for about a month and a half now. I moved to Xeloda. Cure-ious, you had asked about radiation but I had it previously to the lymph nodes and my RO and MO want to use that as a last resort as it was quite brutal affecting my esophagus in fall 2017. Hoping Xeloda is doing something. I'm onto cycle 3 later this week.
Verzenio was super doable for me and miss it! I was on 100mg and only had diarrhea 5-6 times in the six months. Usually brought on by eating raw vegetables or dairy which I cut out entirely. Coffee was also a no-no. If it wasn't for the two areas that are impacting my airway I'd still be on it as it kept other spots all stable and shrunk some bits too
Hope for longevityon this drug for all!
0 -
Hi all, I recently progressed on I/L, so my MO switched me to faslodex. I'm now trying to decide whether to stay with ibrance, start verzenio, or start piqray. I know diarrhea is a big concern with verzenio - does the experience vary or does most everyone have to deal with this? I'm reading back through old posts, but it's hard to tell whether there's anyone who doesn't have that side effect. Any thoughts would be really appreciated. Hope you're all doing well in these strange times!
0 -
Hi Mshar. I would say everyone has it to varying degrees. Even on the highest dose I didn’t have it go on and on (several times a day) like some people but I still have bouts Avery week or so. Some have trouble getting it under control.
0 -
Cure-ious - thank you for the words of hope. My MO wants to look early at 8 weeks after starting faslodex and xgeva instead of waiting full 12 weeks PET. I worry sometimes in looking too soon but hopefully will see stabilization. Praying!!! And looking forward to trying lower dose to get some QOL back! hope you are doing ok.....
0 -
Hi Mshar. Likely you have seen my recent posts. I have been on 150mg 2x per day for almost 9 months (palbo fir 4 months before that but hit ANC too hard) and I made it through the really rough time during first 2 months, but have always had some issues with diarrhea since starting. I have a fairly sensitive GI anyway. I have recently added Xgeva and Faslodex to my treatment regimen for bone metastases, and there seems to be some crazy interaction as the diarrhea has come on super strong and super consistent, pretty much daily. I cannot control it with a combination of an Imodium at this time, so it's time to consider dose reduction for QOL. I've lost about 10 pounds last two months and having a really hard time eating anything. I'm about to lower my dose to 100 mg two times per day and see if that helps. fingers are crossed and I'm praying. Definitely controlled liver metastases and I am thrilled about that. Not super happy to see bone metastases, but hoping with the Faslodex that gets under control.
good luck!!!!0 -
A bit of a long thread, but figured I would share and see if anyone else out there had thoughts or advice. Today, I took myself off of VERZENIO as I just could not tolerate the G.I. effects any longer. I had been doing OK up until two months ago when they added Xgeva and Faslodex and then my quality of life plummeted. I've been living with persistent grade 2 diarrhea almost daily. My doctor is supposed to be providing a new script for me to dose reduce, but I figured I would take a few days to just come off completely and see if my system recovers. This way we will know for sure it is the VERZENIO. My MO wanted me to step down from 150 mg twice per day to 100 mg twice per day with no dose interruption. But according to the label I am having persistent/recurrent grade 2 diarrhea and that calls for a dose interruption. I think one can consider 3-4 Lomotil and 4 Imodium a day to be maximal support for this side effect/adverse effect. And when it doesn't help, something has to be done. I don't like going off treatment because I want to do what I need to do to live, but quality-of-life is so important and mine was literally "sh#t" almost daily for the past two months. I've also begun a search for a new medical oncologist potentially and will be getting recommendations. I think my MO is great with monitoring me with scans and getting me in to radiologists quickly etc, but I don't think she's there for me when I need her for quality of life issues. So much of our communication is via her nurse to her and then back through her nurse to me and that just doesn't work out when I am this sick. I just couldn't tolerate it any longer. I think it'll be a nice breather to be off for a few days or a week and just remember what I felt like when I was feeling well. Then I have a point of reference. Thanks for listening!
0 -
Hi Hopeandgratitude,
I think you made the right decision. I recall very well having that epiphany when I first started Verzenio. I've been on several treatments over the years and nothing compared to how crappy I felt when I first started Verzenio. And it's not like you get a break. At least most chemos have a treatment cycle so you have some better weeks mixed in with the lousy ones. With Verzenio it's every day... I couldn't imagine being able to stick with it over the long haul.
I would seriously consider not only dropping dose but possibly going to once per day. I'm currently on 150 mg once a day and it seems to be very manageable with only one or two "episodes" per week. Something to keep in mind. And I wouldn't worry about the short break... my MO immediately took me off for two weeks when I was having all those miserable side effects and then restarted me at a lower dose. He clearly had no concerns about the interruption and, quite frankly, it took almost the entire two weeks before I felt somewhat normal.
I feel for you with the messages going through the nurse. My MO is not perfect but he's a star when it comes to communications. He gave me his email address early on in my stage IV diagnosis and, although I try not to abuse it, I frequently send him questions/concerns outside of my regular appointments. He is usually very quick to respond and has even sent messages when he is away on vacation! He really is a star in most ways.
I hope things improve quickly. You deserve a break.
0 -
I've been on Verzenio + Faslodex for 15 months, with quarterly Zometa.
I started at max dose of 200mg twice daily. I *had* to travel to a conference that first month, where I did not eat a real meal for three days and took so much Imodium I almost hallucinated. (Actually, I have lingering suspicions that those rabbits attending the conference weren't really real.) HAHA. Uhh, funny-not-funny. Yeah. NO.
So I told my MO about the bunnies and she lowered me to 150mg X 2d right away. Better-- but I was still on-call for emergency diarrhea at all times. Going to church for a couple hours or out to dinner required: eat nothing before going, time the Imodium + Pepto Bismol doses precisely, wear maxi pads and a dark tunic; carry a tote bag with a change of clothes, surgical gloves, and a box of wipes; know where a restroom is at all times, never get on the interstate, etc. UGH.
We lowered to 100 X 2d, where I remain. It took a while, but things are definitely better. I have diarrhea about once a week now. Still wear a maxi pad at all times.
What I learned:
Probiotics, electrolytes, and fiber definitely help.
Also: bananas, hard cheeses, high quality yogurt, applesauce.
I keep Earth's Best Oatmeal Flax Blueberry pouches in my purse, my nightstand, my car at all times. Yep, it's toddler food, but everything in it is good for gut health, and it really helps when I need quick nutrition/fiber and just can't deal with one more thing. I buy them by the case on subscribe & save at Amazon.
At my worst, I had to avoid raw salads, soups, super spicy foods. I eat them now; in fact they are a big percentage of my diet.
Hang in there, gals.
0 -
Thank you Sadiesservent and lulubee. I was beginning to think I was that oddball case and I have spent the better part of 2 months crying over this misery and I don’t think I am wimpy. The nurse and MO just kept telling me to take more lomotil and more Imodium. Ok for short term (bunnies are cute) but not every day. I just couldn’t get them to listen. I feel shackled to the toilet!! So bad that my dear hubby put in a bidet for me when I started verzenio! Thank you two for listening and offering such great advice. Fingers crossed this break helps and so does lowering the dose. Thanks for being there!!!
0 -
Bidet: YES. If I could do this over again, I would get a bidet first thing. At the very least, one of those bidet seats for regular toilets. Totally worth it.
From now on, I will include that in my newbie advice.
0 -
thank you all so much for sharing your experiences with me. this is a lot to think about for sure
0 -
OMG Lulubee, I don’t know whether to laugh or cry. The sh*t we go through! Glad the bunnies were enough to convince your MO. To be honest, I think they’re winging it with these drugs. Early days yet and much to learn.
0 -
I think we have to laugh AND cry. We might as well--we are probably going mad.
Something else that happened at that conference... my friend was at the mic delivering a plenary session. I was on the front row staring up at her, trying very hard to listen but feeling slightly spacey. I knew something was messed up when she developed a bona fide halo. I quickly stepped out, chugged a cup of black coffee, went outside for ten very deep breaths, and then found an empty room and put my head down on a desk. That's when the rabbits came. Every time I closed my eyes, bunnies.
My oncologist said Imodium interacts with the same receptor sites as opioids or something like that (??) and that too much actually CAN cause hallucinations.
Who even knows what all these meds are doing to us. If we ever get the research breakthrough of our dreams and start surviving into old age, they'll probably have to build us MBC "golden girl" asylums where we'll spend our days tap dancing with glittery pink penguins.
0 -
And bunnies!
Amazing. Who knew
0 -
That's exactly what he added...one of those toilet seat bidets. It's been the best and I can't imagine going through the hours and hours and multiple times every day I have been shackled to the toilet without having one. It's a MUST I think for newbies and they should probably put it into some sort of patient booklet. They aren't that expensive and easy to install. We suffer enough and this helps ALOT. Anything to make this more tolerable for us!!
0 -
Do you know what brand and model you have? Maybe give us a review... if that's not tooooo personal? LOLOLOL
0 -
ok, here we go. I am posting a few pics so hopefully your can see the set up and the name etc. Pretty easy to set up....or so hubby says. He got one with best reviews. He set it up in our master bath because we have a separate room for the toilet (tiny water closet they call it) and it’s close to get to. Two knobs to control water flow - generally just use the top one, but not full blast. It’s a pretty decent stream/band of water for “cleaning and coverage”. There is a “woman’s” feature on the other knob and that is a much wider and finer spray. For the diarrhea issues associated with verzenio I always used the top knob. Second picture is with lid closed. Third pic with lid open. I always keep chlorox wipes in there and the unit is very easy to clean, to clean around, and stays quite clean itself. As far as helpfulness, its been fantastic and I have never ever suffered from a sore “bum“ even when I had to make 5 or 6 trips or more on one night. I would HIGHLY recommend. So even though we suffer through the Big D, this can help alleviate some of that suffering. Hope this was helpful and not TMI.
0 -
Thank you so much!! Very helpful! Not TMI at all.
0 -
mshar - just for a different perspective I do believe everyone has a different experience with Verzenio. Mine has not been bad at all. I have been on it since January in combination with Xgeva and Fulvestrant. About a month in I actually asked my MO if it was working or not because my side effects have been so mild. She laughed. This is not to say I've had no symptoms. I will get uncomfortable cramping and mild diarrhea if I eat a rich meal that is not part of my standard daily diet. Fried foods, pizza, rich sauces etc. seem to be triggers for me. Even then, I've only ever had to take Imodium once. I take 150 mg/BID and knock on wood it has not been a bad experience at all. I would say my biggest quality of life complaint is that I feel stiff a lot of the time and my joints hurt. That may be more of an Xgeva/Fulvestrant reaction than the Verzenio though. So many of these meds have overlapping symptoms. Anyway, just more subjective data for you if it helps.
0 -
emac 877 - Amazing! You are a very lucky person to not have to deal with the severity of the side effects. I wish you luck and many years of success.
After pulling myself off the 150mg x 2 for 4 days, I felt like a normal human being, mentally and physically and it felt GREAT!! Eating normally, digesting normally, gardening, feeling good about life. I was so tempted to just throw in the towel and pretend it was all a bad dream. But, at breakfast today hubby and I talked reality and I started on the 100 mg x 2 verzenio and we will see how that goes over the next few weeks. I have a new MO lined up and spoke with a patient of hers, so excited about this switch as well. Xgeva and Faslodex shots tomorrow. Scanxiety starting as I flipped the calendar and see my PET scan scheduled for June 9.
Trying to appreciate the little things - watching the bluebirds feed the babies in the bluebird box. Little ones should fledge any day. My "puppy" turned 7 yesterday. Hubby and I renewed our vows (convalidation) on our anniversary day (May 22) at a simple service and small fun gathering after. Life goes on..... thinking and praying for all of you on these threads. Happy Monday.
0 -
A couple pages back in this thread (around March) we discussed taking ashwagandha with verzenio. Some were trying it, some were stopping, some were looking for more info.
Anybody got any new info or insight on that?
If you're still supplementing with it, how are your TM's holding up?
0 -
Hi Lulubee,
I was advised by the cancer agency pharmacy to stop taking it due to potential interactions with Verzenio.
0
