Abemaciclib Verzenio for Stage IV
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I’ve been on Verzenio since January and it’s working well. But the fatigue really gets to me. I met with the palliative care doctor and we decided to try Ritalin. Has anyone here done that? Just took the first dose. I’m also developing pneumonitis. Scans in November and an oncologist visit to see if it’s getting worse. She said to keep doing my asthma inhalers in the meantime. It’s hard to keep up with my exercise if I can’t walk up hill without gasping for breath. Keeping it at flat walks and swimming
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AJ -That is really interesting. I was talking to my palliative care ARNP about the same issue and she said that because of some odd law in this state (to which we both belong) Ritalin can't be prescribed for fatigue. One of our providers is misinformed or something, but you say you already took a dose. What diagnosis did they put on your prescription?
Also very sorry to hear about your pneumonitis development and need for inhalers, etc. Hope these upcoming scans show good things for you. All the best with this.
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AJ - what dose of Verzenio are you on? I started at 150mg and had tremendous results rather quickly. About 7 months later I began to feel the fatigue. My onc suggested a dose reduction to 100mg but I decided to stay on the 150mg till I hit one year at which time I did lower my Verzenio to 100mg. Not only did I feel much less fatigued, my markers and scans have continued to be great. Next PET is the end of October. Crossing my fingers that all is still stable.
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Goingtobeatthis, that is amazing results. I have also been on Verzenio for a year although I reduced to 100mg after four months. I had extreme fatigue. It has done me well although my last scan showed slight progression. I was off of it for six weeks so we are hoping that is why. I am still on it and will re-scan next month. The only real side effects I have are fatigue and Big D. They are both manageable and better than some of my previous meds.
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@threetree, that’s so weird. Someone has the wrong information and I hope it’s not my doctor! The after visit summary just says, “fatigue due to treatment.” I got the meds with no problem. I jus plan to use it on days when I need to be functional in the afternoon.
@going2beatthis, I’m on 150 twice a day and am having good results. We discussed the possibility of a dose reduction if I can’t manage the fatigue or if the lung issues get worse. I’m very grateful for this medication and hope to continue it for a long time.
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@threetree , I wonder what law the ARNP was talking about? Can you ask?
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AJ - I won't be seeing the ARNP until mid to late next month. I will definitely be bringing this issue up with her again at that time.
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@aj - not sure if you knew that there was a study done on one of the CDK 4/6 inhibitors that was presented at either one of the breast cancer conferences or the annual cancer conference in July that showed that the prognosis and results were the same at 100mg twice a day as at 150mg twice a day. Although it was not Verzenio that was used in the study, my onc said that there is no reason to think it would not be true of Verzenio too.
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If it really is true for Verzenio, that would be fantastic!
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@going2beatthis , I’ve heard that! That would be awesome. I get scans and see my oncologist in November. We’ll talk about it then. In the meantime I have my pep pills!
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Hi! Never been to this chat. I'm stage 4 with bone, lung, liver mets. Have been through I/L, faslodex, xeloda, elacestrant. I'm pretty resistant to starting enhertu or trodelvy like MO suggests next, so I went for a second opinion and dr suggested circling back to CDK 4/6 with Verzenio at the top of her list. Has anyone had luck circling back after other treatments? I realize I'll have to do chemo one day, but today is not the day for me. Thanks for your thoughts!
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Kelq, I am circling back of sorts. Verzenio works the same way as Ibrance/Femara which I started with and was on for four years. Then I was on Xeloda/Femara and Afinitor/Exemestane before being put on Verzenio/Faslodex which has worked well for me for one year so far. I started with multiple mets also but right now I am "stable." My onc refuses to use other terms but in other words there is no evidence of active disease other than a very small met on my spine right now. I am with you and am resistant to start IV chemo even after seven years. Keep us informed, and welcome to this forum.
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@intolight Did you use Xeloda plus Femara?
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@husband11 , yes, I used Xeloda plus Femara. I have always been on some sort of anti-hormone plus the oral chemo. When I took a break from the oral chemo I stayed on the anti-hormonal whether it was Femara or Faslodex.
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Gripe time,
Just wondering how much exercising people are able to do on this drug? Before diagnosis I was used to walking, hiking and swimming. Scans and bloodwork show that treatment is working. I had no cancer symptoms when I was diagnosed. The fatigue is nuts and I can’t walk up the slightest incline without gasping for breath. Walking on the flat and swimming are ok. Anyway, how much do people exercise? I miss being able to do things that I could do a year ago.
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@aj - I don’t have inclines to walk here in So. Florida. I am able to walk somewhere between 2-3 miles a day and find that exercising gives me more energy. As I mentioned, I did decrease my dose from 150mg to 100mg after the first year which made a huge difference in my fatigue level.
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kelq,
I like the idea of circling back to Verzenio. Verzenio is thought to be particualrly effective for liver mets. Keep us informed.
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Aj I don't know if it's the Verzenio or Faslodex or both but I'm wiped out too and it seems to be getting worse. I try to ride my bike or walk, push through it but sometimes I can't. Everything feels heavy and inclines/declines are harder. I can't seem to get stronger. It's frustrating. Scans showed stable so there's that but treatment effects are definitely hard to deal with.
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I sent an assertive message to my oncologist detailing my breathing problems. She’s out of town and the substitute oncologist got right on it and ordered bloodwork and an urgent chest ct. don’t have to wait until November
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@aj - glad you heard back quickly and are going to get your blood work and chest ct scan asap.
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Good morning
@AJ It’s good to be assertive with your team. Your onc knows you and will follow thru with you and your breathing problems. A CT will answer your breathing questions and give him a picture of how your treatment is working. Unfortunately the constant tiredness is what we have to bare to keep this disease from progressing… I hope you can breath easily today…I do get like this when my sinuses are congested, I can’t catch my breath., my allergies 🤧💗🩵
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@shanagirl , thanks! This breathing stuff is for the birds. Otherwise Verzenio appears to be working really well and I don’t want to switch or even lower my dose. I’ve read that a lower dose is just as effective but I have mets in three places.
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While on verzenio, my wife developed a cough that has progressively gotten worse. She quit the verzenio as it didn't appear to be working anymore and went to xeloda. Her cough continues to get worse, and now she has such a bad cough that gets stirred up with just about any activity, that she doesn't want to continue treatment if she can't stop the cough. She has liver mets, ascites, and there is now some pleural effussion. It all started with a virus a year ago, and has gotten progressively worse. No one can tell us what caused it, or what is actually happening. She had some signs of fluid in both lungs, but those have both cleared up over time, while the cough has gotten worse. It's a wet cough, I can hear the flem in her lungs as she coughs. We are ready to try a naturopath or traditional chinese medicine practitioner if the lung specialist can't help. What do we have left to lose? Also considering trying to get her in to Mayo Clinic for an opinion.
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husband11,
Going to Mayo, in Rochester, for a second opinion is done quite often by people in my area (Wisconsin) and I usually hear good reports. I think it's ranked #3 in the USA for cancer.
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so I’ve been dealing with worsening lung inflammation with the Verzenio. I messaged my oncologist and she sent me in for an “urgent” chest ct and bloodwork. CT scan showed worsening ground glass opacities. I got a call from the oncologist office saying that I need to come in for an appointment, they had the time and day all picked out. A little nervous now! Wonder what she’ll say?
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Thinking of you, @AJ! Glad you are able to get in with your onc to figure out what's going on. When is your appointment?
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My appointment is Tuesday
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