Abemaciclib Verzenio for Stage IV
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Hopfull2, that is great news.
My wife's oncologist said that if we requested a reduced dosage, she wasn't sure if Lily would approve an increase again later. No idea if that is so. So for now, my wife is, without the consent of her oncologist, doing 2 x 150 one day, 1 x 150 middle next day. She is actually feeling better, but there are way too many ups and downs to know what to attribute it to.
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Hopfull2, that is fantastic news! Congratulations and may it continue working for you for a very, very long time.
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Husband11, I didn't realize Lily was involved in the decision process. I'll assume that has to do with funding? I agree, there are so many ups and downs that is hard to pinpoint where the root problem is. My MO talked about the option of taking a two week break to confirm the Verzenio was causing the problem, but said many are not comfortable with a complete break in treatment (including me). Again, I'll assume that I could go back to the 150 if I wanted to, but I think that's unlikely.
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SeeQ, Husband is in Canada and for us access to Verzenio is still a bit tricky. I believe his wife is also accessing it through Lilly’s compassionate access program so they call the shots to some extent. Interestingly, my MO was completely on board with playing with dosage and/or taking breaks. I was usually the one who balked. 😊
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Sadiesservant- I see. I thought it might be something like 'insurance'-related. I realize, now, that may have been an insensitive question. If so, I apologize. Just tonight, I told my sister the monthly pre-insurance cost for Verzenio; she couldn't believe it. She said, "Wait...did you say '14'?...like 10 thousand, plus another four thousand??...and that's for one month???" Yeah, it really does sound unbelievable.
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Hi SeeQ,
I can’t speak for Husband but I certainly didn’t see your question as insensitive. I commented as there is often a big difference between Canada and the US in terms of both approach and access to treatments, particularly the newer cutting edge or more experimental stuff. In many ways we are very fortunate and in others, not so much.
The cost issue is amazing. We are often a bit complacent in Canada expecting things to be covered but it’s not always the case. I was lucky I have extended health which covered Ibrance (ouch!) and Faslodex. I used to joke about Faslodex being $650 per cheek.
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SeeQ, no offence taken. Just like you ladies often battle with your insurance companies for coverage, we battle with our Province, and their policy about what drugs are covered and when. For example, in Manitoba, the province will only ever cover a breast cancer patient for one targeted therapy. This may differ from province to province. So that means if you do any of the cdk4/6 inhibitors, they won't cover another. Nor will they cover other targeted therapies, like everolimus if you have had a cdk4/6 inhibitor and vice versa. But, if you got any of them on a compassionate patient basis from the drug company, they may not count that as it didn't cost the system. My wife is getting verzenio on the Lily compassionate patient basis, so we have to get approval first from the cancer board, then approval from Lily. If the drop in dosage is requested because she says the side effects are intolerable, then they may not allow it to be increased again, because they would reason its still intolerable. But then again, all this is subject to someone's whim.
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Interesting. I’m always learning about our own system. Ibrance wasn’t covered in BC when I was on it. I was shocked about Everolimus. I had no idea and it freaks me out a bit as I anticipate this may be next on my list. Bizarre rules...
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I absolutely hate it that some bureaucrat or non-doctor administrator - somewhere - has the ability to make life-altering decisions about our treatment options. It just is not right.
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Use of any recent innovations is so much based on money. Typically coming from someone other than the patient, as there is no way we can afford treatments that cost hundreds of thousands of dollars a year. It's really maddening.
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Hopefully, this is where I need to post about Verzenio. I am on 100mg 2x a day. I am getting indigestion like no other. I have been on Pantoprazole for years and it is not helping now that I am on V. Is there anything else I can add or change?
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Deamo, I'm glad you found this page. I'm sure others will chime in. There was some discussion about this topic, starting back on page 64 or 65 that you may be interested in. As for me, I almost never had indigestion before Verzenio and still only have it occasionally. When it does hit, I take lansoprazole (generic Prevacid) and it works for me ‐ I confess, I forgot to talk to my MO about this at my last appt, because I don't take it very often.
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Thanks for the reply. I hope more will chime in. The indigestion is horrible. Yesterday I took my Protonix, Mylanta and Pepcid and I'm still having problems.
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Deamo 1 -. I did not/do not have indigestion with Verzenio, although I just had a crazy bout of gastritis which landed me in the ER. I am on protonix as a precaution for my Y 90 treatment. Perhaps askyou doctor about something like carafate. It coats the esophagus and protects it. If it persists, maybe an endoscopy to look for ulcer?
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I have tried 150mg and 100mg Verzenio and with both, I get nausea, diarrhea, and indigestion at the 2-week mark. I do fine for the first 2 weeks and then BOOM. Will this get better? I'm exhausted from these side effects and really want to give up.
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Deamo1- yes it takes longer than 2 weeks to get through them as your body adjusts. Look at the Lilly page for verzenio side effects. Are you taking anything to help? Its critical for you to stay hydrated and get nourishment to get through this
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Started Verzenio in late January. Had my first scans since starting Verzenio last month. Showed mets are “stable”!
Just got results of latest tumor markers (CA 15-3 and CA 27-29). Both readings are the lowest they have been since MBC diagnosis in Dec 2019!!
Hoping to get some more “time” from Verzenio
SEs for me are diarrhea and fatigue. From Fulvestrant, joints are achy/sore. Right now, willing to put up with SE if cancer is stable.
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Dodgers Girl - good news!!! Are you managing the diarrhea ok? Are you on 150? Are your Mets bone only?
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Dodgers girl - Hurray for stable! Hurray for low tumor markers!
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HopeandGratitude- Ref diarrea: since I am on home oxygen due to pneumonitis (from Afinitor), I am close to a restroom most of the time. When the diarrhea is more stubborn, I take several Imodium AD to control. There are times I am not sure how I am ill “make” it to a doctor’s appointment but so far, so good.
I started with bone mets only until Ibrance failed. Now have small mets in my liver that seem to be behaving right now.
Was in the hospital for 5 days in January from pneumonitis and last CT scan in April revealed a pulmonary embolism in my lungs so Eliquis has been added to my meds and oxygen remains.
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DodgersGirl- glad to hear Imodium is giving you decent control. I also had luck getting regulated by using Metamucil faithfully 2x a day (careful when to take it with other meds) since Imodium wasn't working well back then. I seem to be doing ok with a couple Imodium every couple days now.
Sorry to hear about the battles with affinitor. I shudder at thinking that drug may likely be my next "bridge" drug if/when verzenio fails. I started with liver Mets. Still on verzenio now at 25 months, but had Y90 for some new liver Mets that popped up. Other 8 Mets still quiet! Will see in 8 weeks how the Y90 worked with first MRI after procedure
Wishing you all the best on verzenio!!!! I did have to dose reduce to 100 mg after about 6 months......
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HopeandGratitude— what was the indicator you experienced that lead to a dose reduction?
I am still at 150 mg twice a day
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I started vercenio 3 months ago. 1st scan and tumor markers were same as yours. Next scan in June. Fingers crossed we both get more time. MO says median is 2 years. Let’s do thus
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ChathamLady— yes! Let’s do this!
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Dodgers-Girl. I had a difficult time managing the diarrhea in the first few months and things then seem to get a little bit better, but then got drastically worse at about 6 months. They put me on Lomotil in addition to Imodium and I was on the maximum dose of both and the diarrhea was still uncontrollable. I started losing a lot of weight and I knew it was just too toxic a dose. So I switched down to 100 mg 2x per day and have been on that for about 1.5 year. Bone met “treated” and original liver mets quiet. Hoping for more time. Treating locally as possible new things that pop up as long as verzenio still controlling others.I wish you many years on it. I know someone who got 4 years. What a gift that would be.
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HopeandGratitude- thanks for the info. Sorry you had to endure that SE.
Years on Verzenio— something to hope for!!
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2 years, maybe 4! I'll put up with the diarrhea!
I get my first scans since starting Verzenio on Monday. I'm on 150 in the am, 100 in the pm. Take 2 Imodium every morning prophylactically and another 2 if I get diarrhea. If I have more than 2 bouts of diarrhea, I skip the 100 dose in the pm. Just tried adding a Metamucil cookie in the morning if I don't have my usual oatmeal.
Hugs, Susan
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Wow! 2-4 years on Verzenio! That gives me a lot of hope. I am still bone only at this point and have been on Verzenio 150mg about 16 months now and have been completely stable. I can empathize with the fatigue. That is by far my most challenging SE. I just had a PET scan Friday so I am anxiously hoping all is well.
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emac877- good luck! Hoping for good results on PET scan
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emac877– hope PET results continue to show stable mets
When do you expect results
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