Abemaciclib Verzenio for Stage IV
Comments
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Yup. It's been an issue for me since day one on Verzenio. I don't have it 100% of the time but need to be careful with what I eat and drink. Anything acidic will lead to problems. Typically, with chemo, I was able to manage it with a baking soda rinse but it was not at all effective with the mouth issues with Verzenio. My MO prescribed a version of their magic mouthwash which helped but was only good for a short period of time - with an ongoing issue it was too difficult to manage the logistics. He then prescribed a version which includes a steroid. That's been very helpful and lasts for months. I use it sparingly because of the steroid but when I start having trouble one or two treatments usually gets things under control.
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Thanks Sadie, I also had mouth sores on kisqali but for that propolis tincture seemed to help, also it did not last long...with Verzenios is different, prescribed mouth wash works only a little, I will ask for steroid one
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I have a friend who went through chemotherapy. I was first misdiagnosed as having regular breast cancer, and had one round of chemotherapy before the error was discovered. My friend suggested I do a "swish" every morning of coconut oil to stop the mouth sores. Here are her directions, "Do it first thing before you eat or drink and then brush your teeth. If you can't do 20 minutes, just do what you can especially in the beginning. Don't spit it in the sink. I have little plastic cups or spit it in garbage. It will clog your drain."
I took a teaspoon of coconut oil and put it in my mouth. It "melted" and then became liquid. I swished it around. I got rid of mouth sores in a few days. I don't have to take it with Verzenio, but if I ever develop a mouth sore, I swish and the sore goes away within a week or earlier.0 -
hi. I just took my first verzenio pill this morning. I’m crossing my fingers things go ok. I had my Zometa infusion this morning as well. So hopefully that doesn’t make me feel worse. I had forgotten to pick up the Metamucil, so I ordered it for in store pick up. I also ordered imodium too just in case. Just to have both I stock. Hope u ladies have a good day.
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question for you ladies,, around what times do you guys take each pill, and so you take with food ? And do you guys take the fiber ( Metamucil ) on a daily basis or only if your having a bad day with your stomach. Thank you
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I am able to eat well so I take a Verzenio pill with breakfast (plus a few vitamins/meds etc) and the second pill at dinner with the aromatase inhibitor and other vitamins/meds. I was faithfully taking metamucil 2x/day and based on its mechanism of action, would take it EITHER 2 hours after (I prefer this) OR 1 hour before taking the verzenio to prevent any interaction, i.e. decrease in verzenio exposure. You can read this about metamucil. It was precautionary. Lately I have been taking the metamucil 1x/day as I have not been having many issues, but when I remember, I do try to get that second dose in.
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My wife is getting nausea from the Verzenio. She is finding that it is affecting her appetite. She has to eat plain crackers, drink ginger ale and suck on ginger lozenges in the evening. Sometime (or maybe more often) she feels nauseated in the morning and can't eat for quite a while.
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Husband11 - I had zero appetite, and actually food aversion, in the first 2-3 months and had to force myself to eat, but that resolved itself over time. I have never been a morning eater, so that's still a challenge. I try to eat and take my pills by 10, and then again between 6-7. If I take my morning pills later, I push back my nighttime pills a bit. This last week, or so, I've had less GI problems. I'm not sure why, but I'm not complaining either! Lol
Note: I'm now a lot pickier about what I'll eat now, and I allow myself the treats I used to restrict.
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Hi Husband,
This has a familiar ring to it. My first two weeks on Verzenio were awful. I had so much nausea that I struggled to even get fluids into me. I couldn't cut it so reached out to my MO who immediately had me stop for two weeks and then go onto a lower dose. (I had been on 200 mg twice a day to start.) I dropped to 150 mg twice a day which was an improvement but not by much so then went to 200 mg once a day (which I took with my dinner). That made a huge difference.
I would strongly suggest a dose reduction. The problem with Verzenio is that you take it daily so there is no relief if the side effects are beating you up. At least with most chemotherapies there is a cycle of days on and days off when you can recover. Verzenio is a constant. I've been on a reduced dose for almost 15 months now and my MO is very much on board with playing with the dosage to ensure QOL doesn't suffer.
I hope she gets some relief soon.
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Bliss - Praying scans went ok and results even better.
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Husband - I had a lot of nausea for the first 6 weeks and lost 12 pounds. I finally had the oncologist prescribe an anti-nausea. 6 months in, I now have no nausea at all
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HopeandGratitude, turns out my insurance denied the PET scan at the 11th hour, so didn't have it as scheduled. They wanted me to do CT instead, but PA argued my case and won, so now I'm rescheduled for 2/1. Oh well, that gives me more time on Verzenio to see if it's making a difference. Thanks for your prayers and thinking of me.
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Sorry Bliss, but yes, maybe it will all work out for best, but I know the anxiety! I used to have routine PETs until I went onto Medicare and then they were denied, so back to CT with contrast. They will allow in certain cases but for me not routine
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Hi,,,
I’m on Day 5 of Verzenio and so far no nausea and only one bout of an upset stomach which was yesterday,,, hopefully it stays this way. Not sure how long one has to be on it for the bad side effects to kick in.
Husband,,, I hope your wife finds sobe relief. I know nausea can take a toll. I had it very bad during radiation,,, I lost so much weight because of te nausea.
Bliss,,, good luck on your scans. You will be in my prayers. I know the anxiety we tend to get during scans. Hope everyone had a nice weekend.
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Hi - would like to know if people here on Verzenio have received the COVID vaccine. In Canada the roll out of vaccines are slow, and I had heard that people who are immunocompromised such as cancer patients receiving chemotherapy might be low on the wait line, as they vaccine research team have not tested on this population during the vaccine clinical trials.
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Hi Bliss. I see you were HER2+ (ERBB2 amp), but are now considered HER2 low - I am assuming by IHC? I am HER2-low. I wondered if you saw the recent JCO article: HER2-Low breast cancer: pathological and clinical landscape. Vol 38, Issue 17, p 1951. In the article they discuss, and there are ongoing studies - some with promising results - that show that some of the HER2 directed therapies, like ADC directed to HER2 and carrying a toxin could provide benefit to the HER2-low population, offering us more options. Obviously trastuzumab or others specific for the ERBB2 amplification would not have benefit, but others that use HER2 as a target for delivery could be very beneficial. I am keeping my eyes on this and am hopeful. They are now trying to better define HER2-low. Right now it is 1+ or 2+ by IHC and ISH negative.
I am looking at new and old options as it seems I might be coming off verzenio sooner than I hoped, which scares the heck out of me. I feel like I am on the roller coaster and coming to the top of that first big hill. I am doing ok and have been stable for almost 2 years, but nothing lasts forever. My tumor markers are now trending up. I have a scan in March so will see what's happening. If PD related to liver, likely onto affinity and aromasin/faslodex, but I am starting the search for the "what's next" after that.
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nnc,
I am on verzenio/faslodex and have had my first covid vaccine. Nurse said may take me a little longer to build an immune reaction because of meds that affect immune system. Never asked what meds I was on.
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NNC, I just heard that in Manitoba, we are the first to come up with a consent form for people who are immune compromised, breastfeeding, or other medical categories where the vaccine might not have approval. The end result is that people who consent to the risk, don't lose priority for their category (age, personal care home, healthcare worker, etc.). Hopefully Quebec follows suit.
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HopeandGratitude, sorry to hear that Verzenio is perhaps coming to an end for you. I have a similar suspicion. I had a CT Scan on Friday - waiting to hear results - but have been experiencing some increased pain in my lower right ribs and abdomen for the last five weeks or so. It's getting increasingly persistent which may mean that the mets in the capsule of my liver are misbehaving. It looks like we have been on Verzenio for about the same amount of time. Disappointing and worrisome I know.
nnc, I am also in Canada and have to admit that I'm a bit frustrated by the approach to vaccinations. Here in BC they are indicating that cancer patients, originally deemed high priority, will now be in the fourth tranche if they are on active chemo or an immunosuppressive treatment. This is based on the view that the mRNA vaccine has not been tested on cancer patients as you point out. Of course the technology was developed for cancer treatment. The interesting wrinkle, they are waiting for the Astra Zeneca vaccine which is showing 70% effectiveness. If I wait longer (not currently on chemo so would be in the 50-59 age group) then I will likely receive the Pfizer or Moderna vaccine which are in the 95% range for effectiveness. Interesting...
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HopeandGratitude, yes I am as you say 2+ by IHC, but negative by ISH. I am aware there is testing/trials for Her2-low and the info you provide is very interesting. I hadn't seen this article, so thank you and I'll be keeping an eye on this, too. I'm sorry to hear that Verzenio may no longer be working for you and hope that's not the case.
Moominmamma, nice that you got the vaccine!
Sadieservant, thinking of you, too, as you wait for scan results and hoping for the best.
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Sadiesservant, good luck with your scans on Friday. Will be in your pocket as we say. I’ll be having tumor markers tested in February and scans in March, unless there’s strong reason to do them earlier. If there is progression, I’m very tempted to start skipping testing for tumor markers on my next treatment. All this testing is nothing but anxietyprovoking and in the end, it’s the scans that matter anyway. I think I’m needing some peaceful time between the scans.
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Did I read some pages back that some of you are experiencing hair loss with Verzenio? Quite a bit of my hair seems to be coming out in my comb every day now.
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Bliss, yes. I've been losing hair, in my hairbrush and the shower. Not so much, yet, that other people notice, but I can tell.
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SeeQ, that's me, too, and I can only think it's Verzenio. How long have you been taking it? I've been on it now close to 3 weeks.
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Hi Bliss,
I’ve been on it for about 15 months. I noticed in September (I think) that my hair was thinning significantly at the temples and top of my head. Of course, Murphy’s Law, I then had radiation for skull mets so lost my hair on my nape/back of my head - just to even things out.
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Bliss, I started in July. At first, I thought maybe it was from starting the AI at the same time, but it hasn't stopped after 6 mos.
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The saga continues. The hold up is with my insurance company. They have now decided to cover Verzenio, which is great, but for whatever reason want the prescription to be for 14 days instead of 28. I don't even know... it makes no sense. So, long story short, still waiting. I started taking my morning dose only on the 14th and have only been completely out for three days now. My MO is aware and we have both made calls back and forth between the pharmacy and the insurance but ultimately it's on the insurance company at this point. I have been told possibly Friday. So fingers crossed. I am more angry/frustrated than scared at this point.
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emac, that just stinks. It can be so frustrating dealing with insurance when they are interfering in your care. It just doesn't seem right. I hope you can get it sorted out.
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Sadie and Hope I wish you both that verzenio still works for you. I have Mri of liver next week and they will do one more slide of spine which I had irradiated two month ago...just to check on it. Reall scan to see if SBRT on my wertebra worked will be PET CT in march. Here the insurance dont pay me for the verzenio, I have to pay myself, since I already had CDK4-6 (kisqali) and had small progression on it. It is not so expensive like in US but still a lot of money. Regarding the tumor markers I ask not to tell me however if they are good my MO always tell me that they are good, she doesnt know to shut her mouth
. As per side effect, I get rarely diahrhea, no need for immodium and I had mouth sores, from which I thought I have osteonecrosis of the jaw... pain and swelling did not go away at one place, so I went to dentist and my wisdom teeth partialy grew..it was never out...and I am 46, well muchbetter than necrosis. Crazy life of MBC. Good luck to all of you.
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Emac, how frustrating for insurance to drag their feet about your Rx. That is outrageous and I'm angry for you! Mine dispenses in 14-day increments, too, but so far I get it when ordered.
Maaaki, so glad you don't have jaw necrosis. Trusting you'll get good scan news next week. I'm due for a PET/CT 1 Feb that was canceled last week due to insurance issues. And so it goes...
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