Stage III and Verzenio
Comments
-
Thanks Juli, it really helps to hear other people's experience, and to know that the diarrhea is manageable and won't tie me to my toilet for the next two years!
0 -
Hi homemom:
I am struggling very much with lymphedema myself. I got it right out of the gate after my mastectomy and lymph node removal. I also ended up with radiation as well. I have had a recent flare that won’t reduce no matter what I do. It’s in my hand and my hand is huge. It’s so painful. I want to look into possible surgical options but in Oregon the one PS who did them at OHSU is leaving that practice. I feel like the lymph node transfer would be risky due to the fact that a person could them get lymphedema somewhere else::.: Where are you located and have you looked into it at all??
0 -
First Verzenio pill (150mg) this morning, followed by a small breakfast. I really didn't expect to experience any side effects for at least a few days, but 45 minutes after the pill I realized I was super nauseous, wondering if the yogurt I ate had gone bad, then realized, maybe it's the verzenio?? Any tips for avoiding nausea? I have zofran/compazine/etc available from my chemo days, but taking those every day for the next 2 years doesn't seem like a great thing.
0 -
Hi mle42...I started Verzenio back in November and had the same issue w/ feeling nauseous. I found it only would last about an hour or so & after about 2 weeks of being on the pills, it went away for me. I developed a seroma after radiation & needed to have surgically to remove. My oncologist took me off the Verzenio so I could have the best chance of healing quickly (my white blood cells were lower than they liked)....I just started it back up last week and the nausea came back almost immediately but I think it's starting to subside.
0 -
Dear Peggums22,
Welcome to the BCO community. We are so glad that you reached out to share your story. We hope that you will find support and helpful information here. Please message us if we can offer any assistance to you here so you can connect to what you need.
The Mods
0 -
I am now about 5 months into Verzenio on a reduced dose (100) due to low WBCs. I feel pretty good after a somewhat rocky start. I honestly think that your body gets used to the medication!
1 -
Thanks, Peggums and scaredme, that helps to hear!
0 -
My doctor mentioned Verzenio this week to me and why he wants me to start it. He is sending in a pre authorization to my insurance for coverage. I'm stage IIIC with 20 lymph nodes involved. My first words out of my mouth was asking about the SE's. It will be worth it to me to get a longer time before reoccurrence. But, it is scary to think of the upset stomach issues as I am in an office and share bathrooms with 9 other people, one being male. We have two bathrooms and try to save one for him, lol.
His plan is to start me on the 100 mg dosage and see how I do. More bloodwork, yay!! Insert a bit of sarcasm there.
0 -
I started Verzenio last week and so far have not needed any of the Imodium that arrived in the same box. I'm guessing that's because my MO put me on the 100 mg dosage instead of the 150. Blood work is scheduled for Friday.
I sure hope this stuff works because having so many positive lymph node is scary. *crosses fingers*
0 -
I’m on a verzenio break! Not because I needed a break - but in preparation for upcoming gallbladder surgery. Pausing the med 2 weeks pre and 2 weeks post op. Gives us an opportunity for a blood test before I restart to see what happens to all my numbers after a month off.
Diarrhea was IMMEDIATELY better
0 -
Well, one month down, 23 to go!
My blood counts have been trending down and are well below “normal” but thus far are still above the threshold where my doc says we would need to dose reduce. (I’m on 150mg now) Happily my liver numbers are fine - my liver got all dramatical during chemo but isn’t bothered at all by verzenio. Go figure! GI stuff is….. unpleasant. I think the super painful cramps are worse than the resulting diarrhea. Things have definitely improved since I started taking my morning pill after breakfast instead of before, but now I have episodes of cramps/diarrhea/fatigue at random times of the day instead of the 10am episodes I could set my watch by for the first week. But at least at this point it isn’t every single day, so I’m willing to stick it out for another month and hope things continue to improve.
Txlorelei, I hope you’re still doing well with it.
Kotchaj, did your insurance come through
0 -
after 4 weeks off Verzenio (for another surgery) I am restarting it tomorrow. Curious if the fatigue and diarrhea will be as bad as it was before…. Trying to just think good thoughts. No use borrowing trouble.
0 -
Ladies, thank you for taking your time to post on this thread. So many of us are looking for that next new drug that might keep us away from a reoccurrence in the future. As a 13-year survivor of DCIS, I was stunned by a new DX, and a new, more aggressive primary. But I have been following along with your posts and I feel hopeful that Verzenio may work at keeping BC at bay. I have several weeks of chemo ahead, but will adamantly request a discussion of Verzenio with my MO as part of the next phase. I hope you all will continue to post and let us know more about SEs and results! Thanks again
0 -
I've been on Verzenio for about six weeks. My blood counts on Friday were at the low end of normal and I'm having episodes of diarrhea every 2-3 days. My doctor decided to keep me on the 100 mg dosage for now.
Someone on these forums mentioned taking a half tablet of Imodium daily to keep things in check. I decided to try that but it's too soon to tell if it works.
0 -
Even with half a tablet of Imodium I was having real problems swinging wildly between diarrhea and constipation. I'm having more luck with Lomotil, which is less effective against the diarrhea but for me that's a good thing, it works just barely well enough against the diarrhea and doesn't push me into constipation, so I can take it every day. Unfortunately, most days I just feel..... gross. Bloated and crampy and poor appetite and very, very tired. And still with episodes of excruciating cramps followed by liquid diarrhea a few times per week. I'm at 7 weeks on verzenio now, and I think that if I'm still feeling like this at the 3 month mark I'll ask to reduce from 150mg to 100mg. But I just don't know. I also feel like if I don't do the absolute max to prevent a recurrence, I will always regret it. It's so hard to make these decisions. In the 1 month window between radiation and starting verzenio, I was starting to feel like myself again, and not think about cancer every day. Now with these side effects, it really weighs me down, while at the same time everyone in my life thinks that I'm "done" with cancer so I feel like I'm supposed to act like I'm OK.
0 -
runnergirl - sorry for the late reply, I didn't add this to my favs. I live in Florida but I have not looked into the surgery. There is the bypass they do at the initial lymph removal now, but it isn't where they take it from another part of the body. They take nodes that are not removed,and create another passway somehow to the nodes that were removed parts that are left, if that makes sense? So I guess there are the "ends" of the affected nodes that they can attach to the nodes that weren't removed, creating path for the fluid build up to flow out.
I may ask my MO about it when I go, if not maybe contact the PS that did my surgery.
0 -
Well, I've been on Verzenio two weeks at the 200mg dose. OOOF! I had my two week appointment today and to say that the last two weeks have been rough is an understatement. My oncologist today took me off for a week and has added Lomotil and Questran. The big D has been HUGE. I tried taking medication before I took Verzenio in the mornings, right after, waiting until I ate, etc. I still ended up needing fluids today. Port was removed two weeks ago tomorrow. Blew a vein right out of the gate today. Sorry for the poor me post, but man this has been rough. The oncologist did say that when I restart next week if the symptoms don't improve, they will reduce dose me. I'm also on Arimidex so I feel like he has me on a mega dose for the hormone inhibitor plus this. I want this to work for me, but I'm feeling a bit down today. I guess the silver lining is I will be able to eat Easter dinner. I've been afraid to eat due to the immediate horrible side effects.
0 -
kotchaj,
I’m sorry you’re not feeling good. I hope you and the docs find the magic sequence that can get you some relief
0 -
Kotchaj, I'm sorry it has been so rough! I'm having a hard enough time with 150mg, I can't imagine trying to manage on 200mg. I wonder if your oncologist explained why you are on such a high dose? According to the Lilly website for Verzenio, 200mg is only suggested if given as a single agent, and 150mg is the standard dose if combined with endocrine therapy like arimidex.
0 -
mle42- It was explained to me by my oncologist that even though I'm also taking Arimidex, because of the 20 lymph nodes that were positive for cancer, he wants me on the higher dosage for as long as I can handle it which was apparently two weeks, ha! I will try again after this week off, which by the way, today already made a difference. Instead of over 10 episodes, I'm down to two today. I never thought that most of my conversations would center around poop at this point in my life, lol. I have to laugh about it because I don't have any fluid left in my system to cry at this point in time...
thank you all for the kind words. They mean a lot to know that I am not the only one who is trying to get through this.
I also noticed that my signature was wrong. I'm stage IIIC.
Left, 2cm, Stage IIIC, Grade 2, 21/20 nodes, ER+, PR-, HER2-
0 -
Kotchaj - got it. makes sense. hope you enjoy your week off and feel better!
I totally relate.... I have had more discussion about my bowels in the past month than I think the entire previous 40 years of life!
0 -
I am on it and would love to be part of the study if the offer is still there. I am stage 3c with more nodes than sense. Did anyone have problems with mouth sores not going away while on this med. I have had lots of blood problems so hoping she will drop my dose.
0 -
mle42-
Just saw your post about insurance. YES, it came through, yay!
I restarted my Verzenio this past Tuesday at 150 mg instead of the 200 I did prior. I was also able to do a dose reduction exchange with the pharmacy as they had already sent my next months' worth of pills. My doctor had to complete a form and send it in and then the pharmacy contacted me. You're allowed to return one full month of meds to them in exchange for the lower dosage. I was so thankful because there was no way I could take the 200 anymore and didn't know that was going to work with me needing the lower dosage. My pharmacy is Accredo that my insurance uses.
0 -
Oh good! I can’t imagine 200 mg. My onc keeps suggesting we reduce my dose, but my labs are mostlyfine so I’m really going to try to stick it out until at least the 3 month mark on 150 mg.
0 -
Taking a half tablet of Imodium every morning seems to be working for me. I tried stretching it to 36 hours, but that was unsuccessful.
After nearly 2 months on the 100mg dosage, my blood counts are slightly low so my MO didn’t recommend any changes.
Unfortunately, my MO is leaving the cancer center so she introduced me to a new doctor this week. The visit was so fast I couldn’t get a good read on New Doc. I guess I’ll learn more at my next appointment.
0 -
I started Verzenio last week.
How soon did most of you have side effects?
0 -
Blue22, diarrhea was my first side effect and it showed up on day 5. I would recommend having imodium at the ready, but don't take it until the diarrhea starts or you will likely end up terribly constipated. Some people need to take the full dose of imodium (2 pills), I couldn't ever take more than a quarter dose (1/2 of one pill) without being constipated. So be prepared to play around with it. Good luck, I really hope that it treats you well!
I had been hoping that my side effects would get better over time, since it seems common for the diarrhea to ease up after 2-3 months. Unfortunately for me, after 12 weeks on the 150mg twice a day dose, diarrhea and other GI symptoms were getting worse, not better, so I asked to reduce to 100 mg. I had just gotten a refill of the 150mg pills and have plenty of those around, so I am trying to split the difference: 100mg in the morning and 150mg at night. And even with that small reduction (17% reduction in daily dose), just one week later things are already lot better. I still have some bad episodes a couple times a week, but it's not every single day, and my energy is also coming back! I'm so much more hopeful for a good quality of life for the next 2 years.
0 -
Blue22, it was day 6 for me. I had to get Lomotil prescribed to help with my D once it started. That was another week later when that was prescribed. I also started at the 200 dose and it about did me in. The 150 feels much better even though I still have SE's. They're not as bad as before, but still pretty often and still not really able to pinpoint what causes it and what doesn't. I will say that I usually have a small glass of milk before bed each night and will have to stop that as it seems to exacerbate the D.
I do take one Imodium as soon as I have symptoms and follow up with a Lomotil. That helps me and keeps me from constipation.
Everyone is different as MLE42 says as to what works for them.
0 -
Thank you!
I had serious D with H/P + Xeloda. I tried Immodium, but that just gave me terrible constipation...
I have the Immodium at the ready if needed! I'm just worried it will hit me at the least convenient time....0 -
I am now two weeks into Verzenio. I've had two brief episodes of D, took immodium immediately and it subsided.
0
