Abemaciclib Verzenio for Stage IV
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Rene- it’s working GREAT!! Game changer and life changer
Watch the spinach. Look it up...can really cause or exacerbate diarrhea
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Bengal,
Agree with Sadiesservant. I am 57 and had to dose reduce because of side effects. At 74 they should have likely started here on the 100 mg dose 2x/day. There is QOL that is so important and verzenio is effective at lower doses. With Verzenio the first couple months are tough.
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I hope someone can help me. My mom was just diagnosed with Stage IV breast cancer with bone Mets and is prescribed an AI inhibitor and Verzenio 150mg twice a day. It's been two weeks Since she started and she is having so many side effects. She is 74 and uses a walker, she is constantly nauseous and Zofran is not helping. She is having a hard time sleeping because she feels like she has to use the bathroom and she has zero appetite and is not staying hydrated. She is hardly taking in any food because she feels like she will throw up. I see her going downhill and it's from side effects. Her MO does not want to dose reduce because she has only been on it for 2 weeks. I feel like she can't go much longer feeling the way she does. Does it get better? Is it dangerous to dose reduce so early?
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Thank you for everyone’s advice. Her MO agreed to dose reduce. Wehave a week and a half left of our current prescription so they said to take only 150mg once a day. When we get the new RX we will get 100mg twice a day. How long after dose reduction does it take to see improvement in diarrhea? I feel so horrible for my mom she is constantly back and forth to the bathroom it’s not major diarrhea just the urge over and over again. We also got a prescription for Marinol we start tonight to hopefully get control of the nausea and to get her eating.
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I didn’t have the diarrhea that bad with the high dose so can’t say. However, it took almost a full two weeks before my nausea and taste loss improved. She will need to give it time. You might want to follow the advice recently posted and try giving her a bulking agent like Metamucil.
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Woodlands, I use Daylyte, it has no taste at all. I put it in my water and then I had a little cran/raspberry to flavor it some and give me some sugar.
Begallover, of course your mom can dose reduce and build back up. It's her body, her life....not the doctors. If the doctor won't reduce it, she can cut her pills in half.
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Oops, I should have refreshed my page, I see they did reduce dosage.....good!
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bengall- first month or two are tough. Read through the verzenio/Lilly website on side effects. They also have a decent pharmacist on line you can talk to with questions or second opinions. Make sure your mom stays hydrated if she has diarrhea. The bulking agent (metamucil) changed my life - seriously. I didn't consider it or start it until many months in, while another person (Rene) on this website started with it right away and it helped her tremendously. Early on though, she may need to take immodium as well for control. Also, if she has a lot of anxiety, I recommend that she consider talking to her doctor about an anti-anxiety med for awhile. I had to take one (lorazapem) and I know that helped me sleep and also helped to control nausea. Actually, I still take it. I am finally at a place where I can manage the side effects pretty well. I never thought I would be here, but I am eating a very varied diet, 3 meals a day and desserts, still cautious of some thing I know are triggers, but getting energy back and able to hike and walk the dogs, garden, take gentle yoga classes etc. It takes some time so hang in there! 16 months on CDK 4/6 inhibitor and just got scan results back - liver tumors stable or still shrinking, bone met stable, no new surprises. Happy day for me! Praying it keeps working like this for a long time!!
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bengall- first month or two are tough. Read through the verzenio/Lilly website on side effects. They also have a decent pharmacist on line you can talk to with questions or second opinions. Make sure your mom stays hydrated if she has diarrhea. The bulking agent (metamucil) changed my life - seriously. I didn't consider it or start it until many months in, while another person (Rene) on this website started with it right away and it helped her tremendously. Early on though, she may need to take immodium as well for control. Also, if she has a lot of anxiety, I recommend that she consider talking to her doctor about an anti-anxiety med for awhile. I had to take one (lorazapem) and I know that helped me sleep and also helped to control nausea. Actually, I still take it. I am finally at a place where I can manage the side effects pretty well. I never thought I would be here, but I am eating a very varied diet, 3 meals a day and desserts, still cautious of some thing I know are triggers, but getting energy back and able to hike and walk the dogs, garden, take gentle yoga classes etc. It takes some time so hang in there! 16 months on CDK 4/6 inhibitor and just got scan results back - liver tumors stable or still shrinking, bone met stable, no new surprises. Happy day for me! Praying it keeps working like this for a long time!!
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Nice to know so many are getting good results using psyllium. If mixing the gritty stuff in liquid twice a day becomes too annoying, may I remind everyone about calcium polycarbophil whose brand name is FiberCon.
A couple tablets at noon daily has done the trick for me. It’s somewhat more portable than a canister or packet in case we ever get to go out to eat again or, can we hope, travel to some far away location...
Meanwhile, a drug holiday might be in my future should my neutrophils stay below the 1.0 threshold my oncologist wants to see. I’m approaching my second anniversary of being on abemaciclib and really don’t want to change!
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Hi Bengall, Sorry to hear your mom is having such a hard time. I agree about pushing the doctor on dose reducing because I started off with Verzenio 150 twice a day and I was miserable in the beginning. My SEs weren't quite as bad as your mothers, but I did experience a lot of nausea and diarrhea. I lost weight because I was afraid to eat anything. I started taking "Ginger Rescue Chewable Tablets" for the nausea, which seemed to help and in the beginning ate a lot of rice, toast and bananas to help with the diarrhea in addition to the immodium tablets. The SEs do get better. At least for me they did, but it took about 2 months for my body to adjust plus the dose reduction. I've been on the Verzenio for about 10 months and now I rarely have nausea, just a little every so often, and the diarrhea is mostly under control. I'm also a huge advocate of taking Metamucil for the diarrhea. I take it twice a day and it has helped me considerably. Hopefully your mom can power through the worst of it, because in my opinion it will get better, but she definitely needs to have that dosage reduced. I was pretty healthy going into this and even I wasn't able to handle 150 mg twice a day. Good luck and keep us posted.
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Hi vlnrp, I'm the Metamucil advocate but am considering giving the FiberCon a try. When I know I'm going to be gone from the house most of the day I try and remember to bring some Metamucil with me, but I have forgotten on a few occasions and lived to regret it. It does sound easier to carry some tablets in my purse so I don't get caught out in the world without anything. I think any product that works to add bulk to your stools is the key here, so I'm sure the FiberCom work equally as well as Metamucil. Thanks for the suggestion.
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H&G, congratulations on your scan results. I love hearing this kind of good news. I've been on Verzenio for 10 months and haven't had any additional scans done yet, but it's coming up soon. I did have a mammogram about a month ago and thank goodness that came back clean. It's always a relief when you get good news as opposed to bad.
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Rene - I get scans every 3 months and believe that’s the standard for verzenio. Why have you not been getting more frequent scans? Because I have these done quarterly, no mammos needed
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Hi HopeandGratitude,
I don't think there is a particular scanning schedule associated with Verzenio. I have found that it varies depending on MO preference and how well we are doing. Following my stage IV diagnosis my MO planned for scans every three months barring any symptoms (in which case he would order a scan immediately). Now, having been on Faslodex for over two years and coming up to a year on Verzenio and continuing to show as stable in scans, he has gone to six months between CT scans with yearly bone scans. Of course, as I said, if anything pops up then I get pushed to the front of the line for a CT.
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Sadiesservant- I agree but 10 months seems like a long time to go without a scan if you have only been on the drug that long....and haven’t had a scan since starting? Maybe I am reading that wrong....
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HI H&G, I'm new to this Metastatic disease so I had no idea what the standard was. I will ask him when I see him why he doesn't recommend scans more often. I had my original bone scan done in September 2019, then a PET scan done in October 2019. I also had an MRI done in February of this year, but my MO has never talked about a regular scanning schedule. Honestly I wouldn't want to get one done every three months. What kind of scans do you get? Bone, CT, PET?
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ReneV, I don't do scans but about once a year. I don't like them and they can't cure me. Like Sadie said, if I start to have pain, then yes, scan. I am due for scans, but with Covid, I'm hesitant. I don't have any pain, so not too concerned about it, nor do I have organ involvement.
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Rene - maybe just ask your MO. I have liver involvement as well as bone, so they have to keep a close eye, especially in the liver. So, for me it's every 3 months. At least now. No I don't like it but they need to catch first sign of liver progression or mets appearing elsewhere like lung. I am not sure the involvement of your mets. Seems to me though that if you are just starting on atherapy they would have one scan at 6 months or similar to be sure it's working and not rely solely on clinical symptoms. But if it's limited to bone maybe they just look at this very differently. I would be interested to know.
I was getting PET but now CT and bone scans
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Hi Goldie, good to hear you don't do scans very often either. I was diagnosed with a single metastasis on my T5 bone in November 2019. I opted to get it radiated with a high intensity radiation called SBRT. My MO said they usually wait 3 to 6 months after the radiation treatments before scanning to see if the radiation had eradicated the tumor. When I see him at the end of this month I will ask for the referral and go from there. But I'm definitely going to ask him why he doesn't have a regular schedule for doing scans. He's an odd guy and I'm actually thinking of switching doctors. He's not the one who originally treated my breast cancer back in 2016. My insurance changed and I had to get a new oncologist. My primary referred me to him and although I like him personally, I've often not been able to get clear answers from him. This pandemic has sort of prevented me from seeking out a new Oncologist, and he's not a bad doctor, just a bad communicator.
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I had never considered taking a break from Verzenio and being okay. I was really concerned because my fatigue levels have been through the roof and I'm doing stupid things like forgetting words and on a couple of days forgot to take my meds. I was worried I would see repercussions from that. I haven't, but the panic was there for a moment. I have since put my meds in one of those daily dose boxes which helps. I don't know what to do about the word finding except to laugh at myself.
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emac877 - if it's any consolation, I noticed I lose words when I'm stressed. I may get a word that is closely associated (i.e. washing machine vs dishwasher), or that just starts with the same letter (yeah, that's a big help).
I did notice I completely forgot how to do some work related things - not day-to-day stuff, but stuff I reaally should have remembered. I talked to my MO about it, and had a clear brain scan, so it was the meds or the stress or the combination. I stopped owrking at my very stressful job and it has gotten much better. I'm still pretty distractable, but better.
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Hi Emac,
The los
I got words is more likely to be the Faslodex than the Verzenio. Hormones play an integral role and I have noticed a bit of brain fog whenever I have been on them. (Of course, aging doesn’t help!) Interestingly, when I last spoke to my MO I mentioned the fatigue and he replied that Faslodex is known to cause that. Took me by surprise as I had never considered it to be the likely suspect.
SeeQ, I hear you on the stressful job. I have continued to work full time throughout my treatments over the last four years barring a short period when I was first diagnosed as stage IV (and was convinced that I had two years to live - thanks Dr. Google). However, my role is high pressure and while my boss is very supportive, we are often faced with demands from above and impossible timelines. I can see the signs that the next six months are going to be ridiculous and so have made the decision that it is time to scale back to protect myself as much as to deal with the various impacts of treatments. I will set the wheels in motion next week if possible. It’s nice to have finally made a decision after months of agonizing
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Sadiesservant, I'm glad you found peace with your decision to scale back. It may be harder to step back when your boss is being supportive, but if the nature of the job never eases up, it could just be too much. Now you'll be able to focus that energy on yourself, your health, and your family.
For me, the pressure of the job would never ease up, and had been made worse by having to deal with a really toxic person for the last year. Add to that, my not feeling as sharp as I had been, and there was no way I was going to be able to stick with it - regardless of supportive bosses. I knew it was the right decision, even though I struggled with it. So, now I have a new chapter...I hope to make it a good one.
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How often are you monitoring bloods once you are on a stable dose? I have been having tests every month but was wondering if stretching it to every 2 months or more was plausible.
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Hi nnc,
When did you start Verzenio? I know there is a recommended protocol with regards to bloodwork at the beginning and then, once you have been on it, there are no requirements to follow the blood. I've been on Verzenio since last October and now only have bloodwork prior to my MO appointments. We did go to frequent testing in December/January as we were watching the creatinine levels which, for some reason in my case, were continuing to climb.
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Hi Sadiesservant: I started Verzenio in January at 200 mg twice a day then to 150 mg twice daily, and currently have been on 100mg twice a day since April - so 6 months. I see my oncologist every 2 months. I have a portacath so that needs to be flushed every 4-6 weeks so that has also influenced frequency of blood tests. I've been on clinical trials where the schedule is spelt out very clearly so I am just trying to figure out the protocal for Verzenio re tests (scans, blood test etc) .
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nnc - I have cbc and chem panel every month. Been on cdk4/6 inhibitor (palbo followed by abema) for about 18 months. I see my MO monthly and get bloodwork right there. 5 months ago added xgeva and faslodex so looks like they will be continuing the panels for me monthly. I have mets to liver and bone.
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Thank you all. It does help to know I'm not alone in my mental struggles. I have never had my brain scanned but my MO isn't super worried about it. I actually was just switched off the Faslodex/Verzenio combo and put on exemestane. The pain in my butt that was faslodex (literally) was too much. It hurt to sit down and to roll over in bed and even to pull my pants up and down. I know the research is strong regarding Faslodex but I am just now after two months off starting to notice pain relief. I've been on Verzenio since January and still see my MO monthly for follow up and blood work. I felt good the day I saw her and literally two days later I feel just blah and haven't been able to shake it. Maybe it's the med change, not sure. I'm in the middle of switching things up so I expect a rebalancing time. I'm grateful for these boards. It helps to know there are others out there who get it. Otherwise I think I'd be thinking I was insane.
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I am taking Verzenio 150 mg on week three and using the Metamucil whenever I get diarrhea. Very helpful. Luckily never felt nauseous. Feeling a lot more tired than I did on Ibrance. Hoping this will pass. Anyone trying a primarily vegetable diet and taking supplements to go along with Verzenio? If so, please share what you are taking and any positive results. I am wondering if this might help keep the bone mets from spreading to organs.
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