Abemaciclib Verzenio for Stage IV
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Thank you for the info. It happens in the morning, so I was wondering if it is nutrition related and maybe I didn't have enough in my system. I normally take my verzenio on an empty stomach and when it's happened it has been about 2 hours after. The strange thing is that I always take it without food. Does anyone have good books or websites for nutrition? It seems like there is always someone saying this food or that is not good. So confusing.
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My neutrophils have dropped from .82 to .65 so I am still holding my Verzenio. I think my hair is growing which is a bit worrisome as hope that doesn't parallel cancer growth. I will have blood done again in 4 days and wait a day for the results and that will be 14 days off Verzenio so hopefully my neutrophils will be at 1 or greater and I can resume my treatment.
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Hi nnc, I know some have thinning hair on Verzenio but I had no signs of hair issues so I wouldn’t worry about the growth. I am confused by the neutrophils though. Verzenio doesn’t typically impact the neutrophils. Hope they come back up!
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Hi Sadieservant - low neutrophils has been most problematic side effect I've had with Verzenio. As long as it rises sufficiently I will be able to stay on this treatment. How is your new treatment - compared to Verzenio? I am always interested in other options just in case my time on Verzenio were to come to an end.
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I was on Verzenio and Faslodex for 15 months before it unfortunately failed. (I had been on Faslodex alone for almost two years so had a pretty good run.) Switched to Xeloda which di a great job of beating back the liver mets. Now off treatment as my MO was concerned about my marrow. I suspect things are starting to move again - scan on the 7th so will know then what’s next.
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For those of you who take metamucil, is there a particular time you take it? I was thinking of trying it today.
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Hi star....you probably already saw this in my previous post. The packaging/online instructions for metamucil do recommend taking one hour before or two hours after any medication so as not to interfere with absorption. I usually take it 2 hours after, which ends up being sometime between 10:30 AM and 12:30 PM (I take verzenio at about 8:30 AM but sometimes take other things, like lately an anti-histamine, a little later) and then another dose around 11:30 PM, after my letrozole which I take about an hour after Verzenio. I've been doing pretty well on 2-capsule doses twice a day, but you can go up to 5, I think, several times a day. I take the capsules because they are the easiest version to find that have neither sugar nor aspartame. Good luck with it, I hope it helps.
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To Sadieservant - sorry to hear that the new treatment has not worked well for you. I feel sometimes we are running a race to beat the cancer. At least with all the new meds we are able to have the hope we can have some good years ahead from the time we learn we have metastatic cancer. My husband has just died and I told my oncologist to find a cure fast as I was feeling particularly vulnerable.
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nnc, I'm so sorry for your loss. Sending comfort to you.
prairiesea: Thanks for the tip about timing. I'll keep it in mind. I only took one dose of the Metamucil and it worked really well. Will let my doctor know.
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nnc, I'm very sorry to hear about your loss. peace and hugs.....and a continued run on Verzenio.
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My MO has decided to reduce my dose to 100mg. Let's see how it goes.
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Hi nnc. I too am sorry to hear of your loss. You're having to deal with so much.
I am actually not on treatment at the moment so not really surprised that things are stirring. The Xeloda worked great when I was on it so not sure if they will want to go back to that or move to something else. Unfortunately my MO believes I am now endocrine resistant but I hope to give Afinitor/Aromasin a try.
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Sorry to hear your next steps are not clear, Sadiesservant...hope next treatment works well.
Star, hope things go well on 100mg.
Had my first MO appointment since starting Verzenio yesterday. ANC down to .85 but he wants me to stay with 150 mg for now and see how it goes, and test in another 3 weeks or so (would be 2 but he'll be on vacation and wants to be around to monitor the numbers). OK with me....nowhere near how far ANC plunged even when I was on 75 mg for a shorter period of time. Also asked about booster vaccine which he said I qualify for. They are giving these at the cancer clinic now so I got an appointment for Friday...figuring it would give me a long weekend to recover from any side effects. Sadly, my good luck with D ran out yesterday morning and I had another episode, but 2 immodium seems to stop it for several days. Think I may try other strategies I've read on this thread, such as taking 1 immodium if things are tending in that direction in order to maybe ward off full-on D. Still, twice in 2.5 weeks, manageable with immodium, still feels doable. Otherwise I feel pretty good. TMs to be checked along w/ blood counts in 3 weeks, and he said maybe imaging after 2 full cycles with letrozole/Verzenio (which would be about 6 months since I started with letrozole/Ibrance). Hoping that the TMs continue the descent they started when I was on letrozole/Ibrance.
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My ANC (neutrophils) are also low - 0.82 to .65 and now back to 0.85 so giving it another week to try to increase - so total 3 weeks off Verzenio which is worrisome. Not sure if I will have to reduce dose as that would reduce it from 100 mg to 50 mg twice a day. Received my 3rd COVID shot today so hopefully I have that covered! Will have a CT scan September 19 but wonder if days off Verzenio will influence the results. Hopefully not. Thanks for the kind condolences. Stay strong and hopeful!
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@nnc - I got neutropenic also about a week ago. Happened so suddenly. I had been on Verzenio about a month and 2 weeks prior had decent blood counts. Then I had had to get bloodwork for another Y90 procedure (getting tomorrow) so they took me off of Verzenio. I will be off it for 2.5 weeks. In some ways I feel better than ever. In other ways, I am scared out of my mind because I'm only taking Femara. It worries me that this will keep happening. In the world of the Delta variant - being immunocompromised is really scary.
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@nnc - so very sorry for your loss. What a difficult time.
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To answer the question, "How long on Verzenio?":
I've been on 100 mg Verzenio and Letrozole for 26 months now. Just had scans 9/3. Good news: cancer in liver and bones is still stable. Bad news: new changes in the colon suggestive of inflammation/infection/colitis (including drug toxicity). I've never had colitis, but now I've seen blood in my stool. The colon wall has thickened and there is new pelvic ascities. My albumin and protein levels are still low despite eating a very high protein diet. My other labs inciuding neutrophils are OK. I still have edema in both lower legs due to the low albumin. My MO says Verzenio does not typically cause colitis, but thinks the low albumin and resulting ascities and lower leg edema is due to GI effects of the Verzenio. She has recommended switching to Ibrance, however, MO's Nurse Practitioner told me there was no guarantee that the low albumin would improve by switching to Ibrance (mixed messages, unfortunately). I have resisted making the switch so far due to the risk of neutropenia in this time of Covid. I'm able to control loose stools with Imodium - one a day or every other day. Have been following a low FODMAP diet as suggested by some which has helped reduce the intermittent stomach pain. I have a colonoscopy scheduled. The Verzenio has worked for the cancer, but the silent effects on my colon and the persistent low albumin/protein have me depressed given all my efforts to reduce the effects.
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To Kaufmanscsi: my neutrophils dipped several times since I started the treatment 20 months ago. Usually I took a week off and that was enough to have the neutrophils (ANC) rise to 1 or above. However this time it took 3 weeks for the neutrophils (had 3 blood tests) to rise so I have had a further reduction of my Verzenio dosage. My pivot nurse and oncologist feel that the breaks in treatment can be troublewsome but we want to stay on Verzenio: so I have gone down by 50 mg. I am now on Verzenio 100 mg in am and 50 mg at night. I have a CT scans soon and hope that having stopped Verzenio will not be evident in the scans. Hoping new dosage is sufficient and will at the same time keep my neutrophils at an acceptable level.
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Hi everyone,
I wanted to update that I did about 5 weeks on the 150mg Verzenio and then dropped to 100mg for the past two weeks. Bloodwork has been fine but the GI issues (controlled by Imodium) were sufficient enough for the MO to change my dose. Things are much better now on the 100mg. I have an occasional off moment, but mostly I'm fine.
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Thanks for checking in, it's helpful to hear how everyone is doing. Sorry about the low ANCs nnc, hope the new dose goes better. Glad to hear you are doing better on 100, star. And WeninWI I'm sorry to hear about the accumulated effects on your Colon. Maybe Ibrance would be an improvement?? Not everyone gets hit with low ANCs.
I'm somewhat anxiously awaiting bloodwork next week when my Onc is back from vacation. Will tell whether my ANCs have gone below .85 (which he and I were comfortable with, compared to the below .50 ones I had on Ibrance). Also doing Tumor Markers for the first time since switching to Verzenio. Still just having D every 6-10 days on 150 and hope that continues.....
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hello all,
My MO wants me to start on 200mg tablets of Verzenio twice a day. I was stage 3A, grade 3 with 2+ lymph nodes. My tumor was greater than 5 cm. I see most of you on 150 or 100. Did you start on 200? Thanks for any advise you can offer. Im waiting for insurance and the pharmacy to send it.
Julie
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Hi, I've just been switched to Verzenio from Ibrance because my ANC was way too low even on the lowest dose. I hope I can tolerate this one better. I know there is a common side effect diarrhea but does anyone here also get severe fatigue? I'm not sure which to blame this on, the Verzenio or the covid booster but wow I can barely stand up. Oof 😣
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Hi Juju Mar, I think the 200mg is prescribed when it's not in conjunction with another med. Because I'm on fulvestrant, my MO started me at 150 but has since reduced me to 100mg.
Are you taking anything else?
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Mkestral, I definitely have fatigue, tho I'm not sure it's severe. The combo of the cancer and the treatment has made me feel weaker than I felt before, but I'm not sure the issue is specifically the Verzenio.
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I do take anastrazole and have since March. I finished chemo in March, mastectomy in April and completed radiation in July.
What dose is every one else on? As far as I know, I am NED currently. My oncology office doesn't recommend scans or blood work - too many false positives and she told me their practice gets downgraded by insurance if they order too many tests! WTH! So I only go to her if and when I have new/strange symptoms....is this normal?
Thanks all,
Julie
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Jujumar - I have been on Verzenio for 20 months now. I started on 200 mg twice a day as it was the stand alone treatment. Once you receive the meds you will see the pamphlet indicates blood test every 2 weeks for 2 month, the 1 month for 2 month after that and then determined by dr after that. I am still doing blood tests every month as I have a portacath that needs to be flushed every month so do bloods at the same time. It is worth it as my results have at times resulted in me holding the med or reducing the dose. I have MRI or CT scan and bone scan now every 4 months. Good luck.
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Jujumar - I think 200mg is the standard without an AI, and 150mg with an AI. I was extremely fatigued the first few months of treatment, but it got better ‐ still have some, but not near as bad. My MO ran bloodwork monthly until after I was NED. Now, we're at 6 weeks, with office visit every 3 mos - unless I develop new symptoms. PET-CT scans were every 3 mos; we were going to go to 6 mos, but I'm about to move to another state, so I think we'll scan before I leave (I hope). I was on 150mg twice a day for 9-10 mos. I asked for a dose reduction a couple months after reaching NED, because the D was getting worse and harder to control. I feel much better on the lower dose.
Your MO's perspective on scans and bloodwork seems odd. Some MOs don't test tumor markers, since they are not reliable for everyone. I haven't heard about false positive on scans, myself. Do you have other options for an MO? I didn't care for my first interim MO - capable, but didn't have the communication style I prefer. I'm much happier with my current MO. I hate the idea of having to find a new one after we move.
Lastly - a gentle note - this thread is in the Stage IV only forum. It makes sense that this is where the experience with Verzenio is, but now it's needed everywhere since Verzenio is being prescribed for Stages II/III. I'm also sensitive to the fact that the Stage IV perspective is different. I don't know whether a thread can be moved or opened, or if a new thread should be started for discussion between all stages. I wonder if the Mods have any insight on this.
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Jujumar,
When I was stage III I also didn't have regular scans. That seems pretty standard. You should be having bloodwork regularly when you start Verzenio.
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thank you, I did not see Stage 4 only when I posted....I can delete my post. Thank you for your response.
Julie
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I started a new Verzenio thread for all to contribute:
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