Abemaciclib Verzenio for Stage IV
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emac- so much of the pain associated with the faslodex is where and how they give it. I do not get injections in my butt, but get them in my "muffin top" - the fatty pads above my hips. They also make sure the faslodex is very warm when they inject it and they inject it very slowly. What also helps is to take the pressure completely off the leg on the side being injected. For example, I bend my RIGHT knee and place it on a chair (knee height) and sink all my weight into my LEFT foot when I get injected on the RIGHT, so the muscles on the RIGHT are very relaxed....and then I switch sides. It's key not to tense up. I might have some soreness a couple days after, but nothing that is really bothersome. Faslodex and exemestane have 2 different MOAs. I am on both. If you consider going back on faslodex, give these pointes a try. I also found it helpful to stay moving for a day or so after the shots...walking, gentle exercise etc. Best of luck!
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Woodlands - Interesting. I take the metamucil 2x/day (after lunch and after dinner) to avoid any issues with diarrhea altogether. I don't wait to have problems, but if its working for you as you take it, that's great. I actually had a lot of issues with digesting vegetables and for awhile I could only eat green beans. There is no way I can eat beans to supplement meat proteins as they cause me terrible digestive issues and have for years. I am not sure of any peer-reviewed publications regarding a vegetarian only diet to limit where the cancer goes. Would be interesting. I have had problems keeping weight on, so I try to eat balanced and healthy meals and alot of protein to help keep up my muscle mass along with exercise. My mets were first to my liver and then to bone. I do let myself have desserts although I don't have a major sweet tooth. But I have my ice cream at night during our TV time. It is about QoL as well!!
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Thanks for responding to my questions sadie and hope and gratitude - very helpful. I also found faslodex injections painful and marvelled at one nurse above all the others who administered it without pain. Not administering solutions without letting them warm up is very important. I used to find my self-administering of grastofil was super uncomfortable and caused great anxiety around the procedure.
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Okay, “whine alert". Today I hate to admit it but I cursed Verzenio. I posted on another thread but have really had a rough time lately. Not sure what the story is but pain at the back of my head and base of my skull has been ongoing. I've had constant low grade headaches since July which have now become very intense much of the time (particularly bad when I try to work - I get that I am in front of a computer but have had the same set up since March and now, suddenly I have blinding headaches by 10:00 AM). Described my symptoms to my MO and he fast tracked me in for a brain MRI. Oh, oh.
I had the scan this afternoon and it's immediately clear why there is such a backlog of patients waiting for MRIs here. I was in that machine for at least 90 minutes, all the time listening to the banging with my head pounding. Lord. When I got out I had to sit for a few minutes to get myself together. Got home walked the dog and then.., wham, the cramps started. Seriously? It would not let go. It was hours before I finally got through the “process". Could have lived without that.
Of course there is always a funny side. Gotta love the Covid questions. Do you have a headache? Uh, yes. That's why I'm here. Do you have diarrhea? Oh yeah! Do I have Covid? Not likely given that I've been pretty much isolating myself for six months!
Whine over. Hope you don’t mind the vent. 🙄
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Sadiesservant - I'm sorry you had a tough day today, but feel free to wine/vent away. I was having terrible headaches every morning while I was working (very stressful job), and I couldn't work more than a few hours a day. I still get headaches since I quit working, but usually not as intense and not as often. I realize that my not be a viable solution for you.
My MO also ordered the MRI - which was clear. I can usually zone out during my liver MRIs, but that's next to impossible when it's your head in the machine! At least I didn't have to hold my breath interminably. I hope you get clear results soon.
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SS, so sorry for the bad day and headaches. Praying the MRI comes with good results. Also glad you could find a little humor in the questions.
I got me some Metamucil with Stevia. Pretty much just taking it once a day and seems to be working.....YAY, as I am out of state visiting family and have to fly.
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Sadiesservant - We have this thread so we can whine all we want and there will always be an understanding ear to hear you. So sorry for the headaches. I hope the MRI is clean (pray pray pray). I know stress and eye strain can be an inducer. Do you happen to wear glasses? Perhaps you need a new prescription...wouldn't that be great if that is what it is? I know a well that I had to retire. I couldn't take the stress of a 24/7 type job and all the nasty politics. I am not rich, but we are able to manage and do ok. Who would know when we are locked in our houses anyway. But we have each other, the dogs and a roof over our head and food on the table and a little spare change to boot. I realize how lucky I am in some ways. Please keep us up to date. And yes! MRIs - ugh. I had to go in for an "upper and lower" and was in there forever it seemed. I couldn't even remember the door to get out of the place. Glad I had a ride home.
Goldie - glad the metamucil is giving you relief. I hope it continues to work. I couldn't believe how much it helped me. I still take it twice daily, although I am not sure I need twice, but I hate to stop something that is working. I rarely even need an immodium anymore. And I don't get wiped out from the exhaustive toilet sessions. That's huge for me. So, feeling much better with more energy overall. Not the old me, but the this me is doing "ok".
Next scans not until December so trying to enjoy this time. Although my "new" MO is leaving her practice. Totally through me into a funk. She is amazing. But, not until Jan, so hopefully will have things sorted by then. I still consult with my original MO is PA (I am in NC). He is a breast cancer specialist and we have a great relationship, so I do have that really going for me. With the telemedicine, it works pretty well for a second opinion.
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My only supplement is a generic of Centrum Silver which contains a higher dose of vitamin B12, an important consideration for those of us getting older and perhaps having impaired absorption. I think the recent switch to this formula may have helped reverse a downward trend in my white blood cell counts. We’ll see what my next labs do.
I’ve been reluctant to resume the other things I took previously such as tumeric (with black pepper) since the CDK 4/6 inhibitors are so new it’s difficult to know whether interactions might exist.
It is certainly my hope that therapies like fulvestrant and abemaciclib prevent progression to organ involvement as long as possible. I wouldn’t rely on dietary measures alone to achieve that goal. Unfortunately, the bitter truth is most of us will eventually get lung, brain or liver disease and succumb despite aggressive treatment...
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The message I just posted was a response to woodlands from a few days ago. Did not realize there was another whole page of discussion after her comments!
I stretched my PET scans out to every four months. We are watching a diffuse cloudiness in my chest especially after the class warning regarding possible interstitial lung disease which FDA put out a year ago.
If you have stopped working, for whatever reason, be sure to think about applying for Social Security disability. It's an online process, fast tracked for approval due to a metastatic diagnosis and you get the amount that you would be entitled to at your full retirement age. There is a waiting period but that time interval might already be in your past. Then, you qualify for Medicare after receiving benefits for 24 months.
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vlnrph - Please bear in mind that some of us have been diagnosed with visceral metastases as part of our first MBC diagnosis. We understand the difference between bone only and visceral disease, but many of us still have hope and are fighting hard with many doing well with combinations of local and systemic therapies. Perhaps for those/us on Abemaciclib already dealing with visceral disease you might want to consider more careful or sensitive wording than “Unfortunately, the bitter truth is most of us will eventually get lung, brain or liver disease and succumb despite aggressive treatment...“
Thanks you!
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Has anyone taking Verzenio ever had a blood test to measure your Ferritin? If so, was it high? My primary did a Ferritin test the last time I had blood work and it came back high. I guess normal is 8-180 ng/mL and mine came back at 348. My doctor sent me a message saying elevated Ferritin is common with the medication I'm taking for breast cancer. Has anyone ever heard of this? I'm going to send a message to my oncologist asking him about it, but just wanted to throw it out there on this message board also.
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Goldie, glad to hear the Metamucil is helping you. I couldn't believe what it game changer it was was for me and I was hoping others on Verzenio would benefit from it also. I still do twice a day, I tried to cut back to once a day but I had a lot of stomach cramping so I just went to back to 2x.
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Woodlands - I never took Ibrance but I am very tired on Verzenio. I think fatigue is one of my biggest symptoms. I try to be primarily plant based. I will admit that I am addicted to cheese and so I am not completely vegan. I follow Dr. Michael Greger at nutritionfacts.org because he has a whole team that looks into the most recent literature and science behind plant based eating and it's effects on health. I have made that a focus of my treatment because it seems to be the one thing I can proactively do about this diagnosis. I don't take a lot of supplements. I do take a vitamin D supplement. You are from the PNW too so you understand the challenges ;-) LOL. I have for the last few months taken a turmeric and ginger supplement trying to ease some of my pain but to be honest with you I have not noticed a difference with it. I can say though that having previously been a standard American diet eater with burgers and pizza being among my favorite foods that I feel better when I eat more vegetarian/vegan. I have noticed that my GI system is generally less irritable and I have more energy. I still indulge in pizza or a burger from time to time but they are treats now instead of my primary diet. I don't have any miracle story about halting progression or becoming NED (I wish) from being plant based. I just know I have felt better eating more on the veggie side of things and the added fiber has not irritated my bowels on the Verzenio unless I do something stupid like eat blueberries and coffee in the same meal. That didn't end well.
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My wife will be starting on Verzenio. She was on Ibrance for over 3 years. Her tumor markers are starting to rise. Recent scans show stability. If they show progression, she would be ineligible for Verzenio, as it is currently only available on a compassionate basis from the manufacturer. Hopefully the Verzenio works, and also improves her blood counts.
On the info sent by Lily, it says metformin may interact with Verzenio. Anyone on metformin? Have any advice they received on the subject to pass on to us?
How about minimizing the risk of diarrhea? Any proactive steps to take?
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Hi Husband.
I can’t comment on metaformen as I am not on this. As to diarrhea, she will likely not have problem for the first few days but if it hits she should be very proactive with Peptobismol and Imodium if required. But the reality is, I found it very hit and miss. Diarrhea has never been a major issue for me. At the beginning it was the nausea combined with the taste/mouth issues that sidelined me. I struggled to eat or drink.
Do you know what dose she will start on? Once I dropped from 200 mg things were MUCH better.
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Husband11, ReneV shared a tip for helping manage the diahrrea that has been very helpful for many of us - that is to use one rounded teaspoon of Metamucil twice a day - adjust the amount as needed (you have to space it out from when you take the meds). People have varying levels of diahrrea; the sudden urgency was the biggest problem for me. I tried a couple of different combinations, and now I usually take the metamucil once a day, and I take a preventive immodium if I'm going out and that works pretty well - I always carry immodium with me. I occasionally use Gas-X if the cramping gets bad (sometimes a problem for me after multiple days/doses of immodium). Others have suggested FiberCon, if you don't like the liquid. I'm trying the Metamucil thins (cookies) to see if that works as well.
I didn't have a problem with nausea, but I had zero appetite in the beginning - it's gotten better. I forced myself to eat part of every meal and still lost 10 lbs. (my Verzenio dosage is 150mg, twice a day, plus anastrozole).
I'm sorry I have no information on the Metaphormin, but I hope her scans go well.
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Thanks all. I read up on the metformin issue, and what happens is that verzenio decreases the rate at which metformin is removed from the body. It results in 22% higher peaks and 30 something percent more "area under curve" when patients were given 450 mg of verzenio. That was noted as 2.7 times the standard dosage. So, it would appear that the worst case scenario is that it intensifies the dosage of metformin. My wife is not diabetic, but has taken metformin for years to help fight her cancer (yes, that is somewhat speculative).
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Is there anyone on here who made a successful switch from Ibrance to Verzenio?
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yes I did. Had to go off ibrance because of issues with low ANC. 7 months on ibrance. 11 months verzenio and continuing.... questions
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Hi Husband. It depends on your definition of "successful". I also had to stop Ibrance early due to low hemoglobin. My blood just wouldn't tolerate it but there as every indication that it was working for me. Most interesting, I had a skin lesion appear after my initial diagnosis that simply would not heal. Went for several months. Stated Ibrance and poof... gone. I was discouraged that I couldn't stay on it and then I had quick progression in the bones as the Arimidex failed (possibly not surprising given I had been on an AI for three years as part of my adjuvant treatment).
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Hello ladies. I’m new to the Verzenio group. I’ve been on kisqali/Letrozole for several months but because of high liver counts I will be starting Verzenio next week. Have no idea what to expect although I hear diarrhea is in my future. Would love any and all information on my new combo. Looking forward to making some new friends along the way.
Kathy
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Hi Kathylou. I hope you will take time and skim back through posts for the last couple months because there is a ton of discussion on verzenio and it's hard to capture it all in one response and everyone will be affected differently. This thread has been a been quiet for some time. I was on ibrance/letrozole and had to switch to verzenio/letrozole because of low ANC. It seemed I was off ibrance more than I was on it and that was frustrating and scary, even though I was getting shrinkage in my liver tumors. I switched to verzenio at the high dose and yes, was hit with the dreaded diarrhea about Day 6. I managed through it but had some pretty bad issues over the next few months. First few months be careful on diet! I was on immodium, which didn't give me the control I needed and then they added lomotil. I was pretty much max'd out on both and still could not get control. I had a different MO then and it was difficult communicating with her and she didn't understand the severity of my issues. Finally it got to the point where I was so ill I was losing weight, so I took myself off verzenio for a few days and got my MO to drop my dose to 100 mg 2x/day. What a change for the better! I got my life back. The high dose was just too much for me. I still had some GI issues and was on immodium routinely until another person on this thread suggested metamucil! of all things! I now take metamucil 2x/day, 2 h after my meds, and I am living much more of a normal life now. My diet is varied and I can eat almost anything I want to....but do have to be careful with things that I know will upset my stomach. But, I can go out without all the worry. I recommend when you first start, to carry an emergency bag....Depends, wet wipes, change of underwear, change of jeans or whatever. Use immodium as needed and I also highly recommend the metamucil. Keep it in the car and go to places where you know there will be bathroom access. After the first few months, things should settle and you will be in your "rhythm". Do keep in mind that if you are having problems with the dose you started on, you can get the dose lowered and you will still have an active dose. I have been on verzenio almost 12 months now after 7 months on ibrance and stable so far, thank the good Lord. I pray it keeps working and that it will work for you as well. I do not have the fatigue that many people get. I am fortunate that I do not have to work and I am able to sleep 9 hours a night and rest when I need to. I also try to stay as active as I can with walking the dogs several times a day, hiking with my husband, yoga classes (slow flow and yin 2-3x/week), gardening. I don't overdue it for sure, but I do try to keep moving and that helps with keeping energy and motivation.
Bottom line - it was a rough start, but once I got through it, I am living a reasonably normal life and feeling pretty good most of the time. Some days up and some days down. Life will never be the same of course, but it is good now. I am thankful for that, and maybe as we all do, I still pray for a miracle
All my CBC and chem panels have been fine. ANC is at 1.5 and holds steady, sometimes gets a little higher, so that's a relief. No issue with any liver enzymes, except a slight elevation in creatinine, which is an expected SE and that has stabilized.
As an aside, I did develop bone mets and so have added on faslodex and xgeva and switched from letrozole to exemestane.
I hope this helps and also hope some of the others peek at this thread and give you some thoughts.
Best of luck!!
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HopeandGraditude
Thx so much for your input. I’m nervous about starting Verzenio because I do work a full time job! Sounds like the diarrhea will be a problem at times! Guess I’ll just have to wait and see. I will keep a to go bag close by.... I know everyone is different so I’m hoping for the best but preparing for the worse. Thanks again for the info. I’ll be checking in again soon.
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Hi Kathy,
I do work full time (although I am now requesting reduced hours for a number of reasons) and have found Verzenio fairly tolerable. I couldn’t hack the highest dose as the nausea was terrible and I struggled to eat or drink anything. Lowering the dose took care of the nausea and for the most part the diarrhea has not been a huge issue for me. I rarely use anything to control it as I find the warning signs pretty definitive. It starts with cramping which usually escalates over about an hour until it culminates in watery diarrhea. Once that passes I never have any additional trouble that day. Typically these episodes have been pretty intermittent. I can go for a week or two with no issues. I’ve only had near accidents a couple of times, both when I was out with my dog and far from a bathroom. 😳
I’ve been on it for over a year working the whole time (although working from home since Covid). The only other issue for me has been a tendency towards mouth sores. I find I need to avoid spicy foods and acidic things. I do have some fatigue but it could also be from the Faslodex.
I know it seems scary but many of us continue to do well on this treatment.
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Kathylou,
I have only been on Verzenio (150 mg, twice a day) and anastrazole since July. The fatigue was real, especially in the beginning, and while it has definitely better, but it still catches up to me sometimes. I stopped working in September, so I'm sure that's part of it. I had a very stressful job and started to feel better almost immediately after retiring. I also had zero appetite for about two months. I had to force myself to eat 'something', and I still dropped a little weight in the beginning. My appetite is back - not what it was, but I get hungry now and I can eat a couple small meals a day - and my weight is pretty steady.
Regarding the diarrhea, I'm middle of the road compared to HopeandGratitude and Sadiesservant. It started on day 6 and required a few doses of immodium to get it slowed down. For me the urgency is still an issue; usually, I'll start to cramp and within in minutes I have to go NOW. The metamucil tip really helps when I stick with it. You may need to figure out the right amount for you. On days that I'm going to be out and about, I take the immodium as a preventive measure, and that seems to work (for me, one a day works, but causes painful cramping after a few days; 1/2 per day is not enough to control it). I take Gas-X when the cramping is really painful. I always have immodum and Gas-X in my purse when I leave the house. My MO suggested the liquid immodium would allow more flexibility in dosing (e.g. 3/4 dose), but I haven't tried that yet. When I'm going to be at home for a day or so, I try to avoid the immodium, use the Metamucil, and let my body get back to an even keel. Overall, it's better now than in the beginning, and I'm hoping that trend continues.
Liver enzymes - After dropping for two months, I had a little elevation in liver enzymes, but nothing serious, so far. All my other bloodwork has been good enough. The best part is that my first follow up PET/CT showed marked reduction in the size and SUV of my largest liver tumor and the little breast tumor I have was no longer active - pretty good for about 3 months of treatment.
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Wow! Thank you ladies for all the information. It sounds like you all are doing well and that Verzenio is working. I’ve got Metamucil and Imodium both in pill form waiting to be used! I think if I wasn’t working full time I wouldn’t be as nervous to start. However my job is very good about working me through this difficult time. My oncologist is starting me at 100mg /2 so maybe my side effects will be tolerable. Again I want to thank you all for this valuable information. Glad I found this group! Talk to you all very soon.
Kathy
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Kathylou2u,
I'm late to the discussion but would also second any opinion stating this thread as a wealth of info. Welcome! I have said this before but also wanted to encourage you I didn't have a rough time with Verzenio. My course is a bit different in that I have never taken anything but the Verzenio in the CD4/CD6 class of meds. My biggest complaint is the fatigue and general stiffness I feel on it. I am on 150mg twice a day and that has to date kept my tumors stable with no progressions.
I think my biggest frustration in terms of symptoms is that I have a lot of generalized pain and stiffness and I fatigue very easily. I also miss my pre-cancer/pre-chemo mind. I get foggy a lot and find myself losing words or thoughts easily. I don't know if I can blame all that on just Verzenio though. It seems so many of the hormone therapy drugs and CD4/CD6 drugs overlap with their potential symptoms I don' t know how to separate them.
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emac877 and SeeQ thx for your input. All of you ladies out thereare giving me a wealth of information which is helpful in preparing for Verzenio next week. I’m thinking I should take an Imodium before my meds and then maybe Metamucil later in the day. However it might be best just to see how I react first. We all are a bit different with side effects. Again, I’m hoping for the best but I’m ready for the worst.(I think). Thanks again. You all are such a blessing.
Kathy 🌻
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I am finishing up Round 2 of Verzenio 150 mg twice a day + Letrozole. I HAVE TO take a nap in the afternoon. It lasts between 2-4 hours. That is a bummer, but maybe I will get used to the medicine. As soon as I get diarrhea, I take a heaping tablespoon of Metamucil plus Pedialyte. I don't get diarrhea every day, thank goodness!
I want to share the wipes I use to keep my bottom clean and feeling good: Preparation H Medicated Wipes. Costco and Amazon sells this in a 3-pack box. I throw the wipes in the trash. I love these wipes because it has witch hazel and I have never been sore. I just fold the wipe and use it many times in one visit to make sure I am clean.
I know you probably do this, but wanted to share that I write on the inside of the Verzenio box M, Tues, Weds., etc. so I know what day of the week I am on. I also write at the bottom Week 3, or whatever week I am on. This keeps me organized.I wish I wasn't so tired in the afternoon, but other than that, I am fine having been first on Ibrance for 6 months. My blood test is tomorrow. The last one showed a huge jump in my White Blood Cell count and neutrophils, so I believe in Verzenio. I have lost 20 pounds so far by eating less, eating vegies, and taking a protein powder made from peas and chick peas. Hooray for the weight loss! I have about 50 more pounds to go to be a size 10. I strongly recommend you eliminate stress. I think it will help us keep the cancer from progressing. Let's enjoy our life and appreciate that we know in advance that we have this disease. I believe it is better than just having an accident and dying. Here we can appreciate our life and try to live as healthy and as long as possible.
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KathyLou2u, I forgot to mention the effect on my tumor markers. I should say that this is my first line treatment. My CA15-3 started out in the low 200s, spiked to 885 after a month and only dropped a little in the second month, BUT they dropped below 400 in the third month. My MO was pretty worried after the second month, but the drop in the third month (and good PET/CT) allayed his concerns. I wanted to share that, because having my TMs quadruple in the first month kind of freaked me out, but it seems to be working out, so far.
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