Stage III and Verzenio
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So far, so good with the reduced dose! Had my bloodwork done after 10 days on the med and my numbers were all within normal range. I will have bloodwork in another month, so hopefully things continue to go well! I am still having occassional bouts of diarrhea and nausea, but not terrible.
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I had bloodwork done yesterday after about 6 weeks on the reduced dose of 100 mg. My WBC was 2.84 (reference range is 4.00 - 10 K/uL) and my Absolute Neuts was 1.08 K/uL (reference range is 1.92-7.60 K/uL). The NP said that they were only concerned with the Absolute Neuts being above 1.0 K/uL, so they are keeping me on this dose for the time being. That said, I will be going off of the med in a week or so in preparation for my Exchange surgery on 12/9.
The side effects seem to be lessened considerably, with the exception of some nausea in the mornings. I have noticed a correlation with my hydration levels, so I am trying to stay better hydrated through the day.
Hope all of you are doing well.
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How has everyone been doing? I finally started taking the Verzenio a few days ago. I've noticed strange side effects...my mouth and throat have been really dry. It's worse at night when I'm not drinking water. Lots of stomach cramps and my belly is puffed out like a balloon. The immodium definitely helps with the cramps and diarrhea. I haven't had bloodwork yet so I don't know that info. I really hope symptoms get better.
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hi all,
I'm into my 4th packet of Verzenio. The diarrhea was really bad n the 3rd week with pain and bloating. I've lost 4 pounds since I've started. Doc reduced my dosage to 100mg twice a day. I hope that helps! I really want to stay on this med. I take a probiotic daily and use Imodium when needed. I have Crohn's disease and it's been in deep remission for almost 30 years. The symptoms I was feeling reminded me of Crohn's pain which is similar to labor pains! No fun. Hope everyone is doing well.
Juli
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Is this for anyone with a stage III diagnosis regardless of grade or node involvement? Just curious before I go to the MO next week for my 6 month
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I think so. Anyone with Stage 3 can use this area.
Juli
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HomeMom, if your question is about which breast cancer patients would be considered appropriate for Verzenio therapy, BCO has a good article about it here.
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I’ve been on verzenio for several months and now take 1/4 dose of immodium each day, which seems to do the trick reducing the diarrhea to once a day or not at all
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How do u take 1/4 of a dose? Do u have to split the pill twice? I've started taking 2 pills a day (one before each verzenio dose). That seems to work so far. I have a lot of fatigue though.
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I'm not sure what NotAsCalm is using, but my MO suggested the liquid immodium for more precise measuring of smaller dosages - easier that cutting a pill in quarters.
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it’s not that difficult.
2 pills = 1 dose of the generic immodium.
Split pill in half.
Take one half pill a day.Half a pill = quarter of a dose.
Too much I get constipated. Too little I sit near the bathroom all day.0 -
Hello. I have Stage IV, but I wanted to come in here and introduce myself. I am KBL, and I'm here because I did a study with a company called Horowitz, and they are seeking patients who are Stage II or III who are on Verzenio for a study. Since Verzenio is so new to lower stages, they are having trouble finding participants. The lady I worked with is so sweet, I told her I would try to see if I could find anyone willing to participate. It's a paid study and online. If anyone is interested, please private message me and I'll give you her contact information. The study is starting in January.
I have private messaged a few of you, but I thought maybe this would work better.
Thank you.
edited: I now have a flier with info. Private message me if interested. It pays $1750 -
I just called them and will be participating. Apparently they are also doing another study for caregivers for $175!
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Thank you so much, scaredme. Any research that can be done has got to be helpful in the future. I really appreciate it.
KBL (Kris)
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Are there certain thresholds that have to be met for this study other than being stage II or III and on Verzenio?
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Graceber, I will send you the flier in a private message. I do believe you have to be in the U.S.
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KBL, I'd be interested in looking at the flyer. Thanks!
Juli
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Thank you, Juli. I private messaged you.
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I asked my MO about this and she said they are giving it to newly diagnosed women to use with the rest of the treatments, it wouldn't do anything for me.
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homemom,
I've read that it is most effective for the first 2 yrs. I started it once all my other treatment was completed. Good for you to be 7 yrs out from diagnosis! I hope to be able to be 7 yrs out one day!
Juli
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Juju-mar Yes and no. Seems this is a very promising treatment and may keep you from having to stay on Arimidex for 10 year like me. Maybe you'll be considered "cured" after 5 years like HER2+ patients.
I'm focusing on my diet now. I'm looking to go more plant based and mediterranean. We all have our fingers crossed!
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homemom my MO is planning on 10 years of arimidex for me with concurrent verzenio for the first two years…
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NotAsCaSILook - I guess on second thought, maybe not. I know you can't be too careful, so I'm embracing it. I'll probably be terrified when it's 10 years and I have to go off of it.
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Juju-mar - I saw on another thread you mentioned that you got that lymphovenous bypass surgery. I am struggling with lymphedema and the only surgery I've heard about is the one where they take lymph nodes from another part of your body and transfer them which can cause lymphedema in that area, so I've forgotten about that idea.
What was your surgery like? I assume that you've not developed lymphedema since you're diagnosis and treatment was recently. It took almost two years for me to show any signs of lymphedema. It's a constant battle and I wonder if this would help
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HomeMom,
My lymphovenous bypass was done at the same time as the mastectomy. The plastic surgeon was only able to reroute 2 channels. I do not have lymphodema in my arm, but have some fluid that is hanging around in the chest and side area. I do see a PT for some cording in my underarm area and she has shown me how to help my lymph nodes drain. I wear a sleeve on my arm daily, I use an 8 chamber pump daily for an hour and as of yesterday started wearing a compression tube top (leftover from surgery) to help move the fluid out from my chest. I'm 9 months post op and for the most part feeling normal. I exercise daily and am beginning to lift some weights. My PT told me to keep moving. I'm sorry to hear you developed lymphodema 2 yrs out...
Juli
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Juli I have always exercised. I walk about 3-4 miles most days and go to the gym. I just started trying weight lifting, I've been afraid to until now. My weight is good and I drink nothing but water all day. I like it so it isn't a problem. The only think I have a problem with is giving up my red wine on the weekend. I'm no lush, but I do like a couple of glasses on Friday night!
With all the nodes they took out of me it is hard to believe any surgery would help, but I should at least look into this.
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I met with my MO today, and as I expected, she wants me to start Verzenio after I finish radiation in 2 more weeks. She will start me on the lower dose to minimize side effects.
For those who have had diarrhea, how long did it take for it to become manageable?
Also, she mentioned that because it's an unusual drug, that many pharmacies don't stock it and have to send it through the mail. What has been your experience?
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Txlorelei
From my perspective, the diarrhea is a side effect onto itself! It took weeks…. Months… to find the right way to address it for me. If I miss a dose of meds, or am considerably late on a dose It stillhas huge ramifications. My blessing has been the COVID pandemic. Being able to work from home I'm literally outside my bathroom. Working in an office would not have been an option for at least 3/4 months. It is considerably worse in the morning.
As for delivery - mine are mail delivered. That's the best part. They are stupidly expensive. Even after insurance. But they have a program that'll cover the copay - so I pay nothing. (But they can still milk my insurance company)
For me - It's the idea that this drug severely reduces chance of recurrence. I can balance the crappy (pun intended) side effect in exchange for decent quality of life 2o+ hours a day0 -
My MO also just prescribed verzenio, I'm planning to start it in a few weeks. I know it has to go through my insurance company's specialty pharmacy and I'm sure lots of pre-approval steps before that. I'm nervous about the SEs but motivated to make it work, and reduce my risk of recurrence. I'll be starting on the standard dose (150 mg) but my doc says we will reduce dose if necessary.
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I started at 150mg in November. The diarrhea was pretty severe at 6 weeks, so we dropped to 100mg twice a day. I had luck with Imodium a few times a week. I'm now only needing it maybe once a week or once every 10 days. The diarrhea is mostly gone. I haven't noticed any other side effects. I too work from home and am so glad for that. My insurance covers the cost. I only have a $10 copay. It's mailed to me every 2 weeks. You'll get blood draws every 2 weeks for the first 2 months, then monthly for another 2 months, then whatever your MO recommends. If we have to have BC, I'm so glad there are new treatment options.
Juli
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