Abemaciclib Verzenio for Stage IV
Comments
-
@dulcea seems that Verzenio is the preferred CDK4/6 inhibitor for those with brain or skull mets. It is the only one of the three CDK4/6 inhibitors (the other two being Kisquali and Ibrance) to break through the brain barrier.
When I was first diagnoised, I interview three oncologist. All three initially recommended Kisquali until a brain MRI revealed 2 skull mets.
1 -
@dulcea I was wondeirng the same thing - why not so much conversation here? Not that I want a bunch of women to have to be here either! I'm going to give it my best when back on V and will just keep thinking of getting better. But 3 months is a long time to feel like crap! I'll do it though! Have you had another appointment since your numbers went up? Or you did at least get a good answer I am thinking? @goingtobeatthis Interesting about Verzenio being the preferred CDK4/6 for us with brain or skull mets. I had not asked that specific question about Verzenio but I had asked that whichever CDK4/6 I am on will it work on the brain or skull mets. The onc answer was yes it will but she never said that it was because it was Verzenio. I guess they must have decided at that time I was going to be on it and had not shared that with me at that time. I am finding unless I ask extremely pointed specific questions I don't get details.
So next week I go get my numbers checked again after being off V for 2 weeks. My white blood cells are way down so they need to see those get back up before I go back on V. I am going to my neices' graduation this weekend and seeing so much of my family. Looks like I'll be masked up!
0 -
@marcials1 My WBC has been in the low 3s (mostly 3.4) after taking Verzenio for 9 months. Once in a while it will be 3.9 or low 4s (normal range at the lab is 4.0-10.5). My onc always says it is fine and that I am not autoimmune deficient.
I agree 100% with your comment "unless I ask extremely pointed specific questions I don't get details." I have also learned that some of my doctors are impatient with me asking pointed questions that they think are irrelevant but it is my body and they should understand that. It might be irrelevant to them but it is not to me.
Hope you have a great time at your niece's graduation and are able to enjoy visiting with lots of family. I still wear my mask when we are around a lot of people. It's funny but I know they can tell when I am smiling. They smile back at me.
0 -
@going2beatthis Thanks! I am looking forward to getting out of my house for something other than a doctor's appointment. I'm a little worried with my immune system. My WBC was 1.99 on Monday. And my Neutro Auto was 0.78. Yikes?
I still plan to go and seeing family will be a mood booster. Just need to be safe.
That is pretty much infuriating that some of your doctors are impatient with your questions. My doctors are getting annoyed with me because I have to keep doing their job - like scheduling labs when they schedule a follow up with me. They forget to order the labs and I have to do it - and I let them know! They need to remember the position and responsibility they took on becoming doctors. We as patients end up doing plenty of research and time investment the least they can do is answer our questions timely and with some compassion. I know they are not all that way - some are awesome.
0 -
@marcials1 I agree… go and wear a mask. If nothing else it will remind others who may be sick to stay away from you. My WBC is good but my RBC is low. My onc says that's ok as they are consistently low and not dropping or changing. She says my body has stabilized at that point, and she watches it for changes not levels. She is not worried. I never heard that before.
I am sorry you can't trust your doctors. That is so important. I do keep a close watch on things but for the most part they stay on top of things.
0 -
@marcials1 when I finish my appt with my onc, she says when she wants to see me next. That is when I make the next appt with her and the one for my labs. I am fortunate enough to be less thatn a 30 minute drive from the clinic. I always do my labs 3-4 days before so that the results are available to discuss at my vist with her.
0 -
@intolight I'm hoping with my next few follow ups with onc or her PA that I get a baseline they can monitor and not worry so much about low numbers. I do hope they come up a little from this to form the baseline though! And thanks for the encouragement to go see my family. I already told them all NO HUGGING!
I wish I could trust my doctors more too. This is my second round dealing with this cancer hospital and 11 years ago they were A+++++. Not so much now. I still feel lucky enough to have insurance and be working with people that specialize in MBC but still would like if they seemed to care just a little more.
0 -
@going2beatthis I usually have appoinments made when at a follow up or other appointment. They always make the actual appointment and say they will make the lab appointment or MRI appointment for the radiologist to look at, but I end up calling and getting those scheduled. They forget that part!
0 -
@marcials1 I go in a little early before my appt and have my labs done as a walk-in. They are usually ready in about 20 minutes as my onc labels them stat so this works, and her office is at the hospital. She puts in the order while I am there so they are ready for the next appt. She orders them every month so they are ready for my Faslodex shots too if I don't see her first. It is a large system so perhaps it is routine for them. Of course it takes more time for the appt, but it works for me.
0 -
@going2beatthis thank you for sharing the reason for your Verzenio treatment. But it now makes me wonder why three oncs suggested Kisqali to start your treatment (*but see below*). And good for your for interviewing three MOs!
I was initially put on Ibrance but was mostly off it during the first cycle. I developed neutropenic fever and had to have daily injections of Neupogen to get my ANC up from .44 as well stopping Ibrance. I cancelled a girls long weekend trip to Florida due to my low ANC and I regret that because it was so hard to get that all together. So @marcials1 , I suggest going to your party and enjoying that! My local MO was going to just lower my dose of Ibrance after my ANC returned to a reasonable number but my second opinion doctor suggested Verzenio because "There are studies that show a survival advantage using *ribociclib* and abemaciclib, but not with palbociclib. The progression-free survival is the same for all three CDK4/6 inhibitors, but the survival benefit was not seen in the PALOMA trials. " I'm not too sure what the difference is between a survival advantage and a survival benefit but I willingly changed to Verzenio because Ibrance was just scary to me. That's how I ended up on Verzenio.
On another note about brain/skull mets, my original bone scan showed some mets to my skull. I freaked out because I was thinking that my skull was next to my brain and that it might further spread to my brain. My MO said that the skull is a bone and should be considered bone mets. Brain mets are different and should be considered and treated differently. Have you heard this too? Further remembering about my skull mets, my PET scan did not show the skull mets at all and I wonder about that. Do PET scans show skull mets? The reports literally say that there were no mets in the head and neck area anywhere. So who do I believe? I need to look into that. I'll put it on the list…
@marcials1 I have not had another appointment nor had an answer to my newly increased tumor markers. I have been waiting for my second opinion doctor to write up her visit notes hoping she addresses it in that. It usually takes a little over a week to see her notes. I also have not had an appointment with my local MO to get her opinion. I will see her in two weeks and it will be the last time I see her. She is also another one who does not answer questions but has the talent of avoiding. I am hoping my new local MO is better.
@intolight, that makes so much sense that you MO said that consistently low is OK, it's when something changes or drops, that she stands up and notices. I will keep that in mind. I also have consistently low RBCs and all my whites are good!
0 -
@intolight - your markers are back by the time you see your onc? In the beginning, when I was doing my labs the same day as my visit, the CMP and CBC were back within half an hour but my markers never came back till lat in the afternoon.
@dulcea - my 3 interviews were all prior to finding the skull mets. I think the mo I had decided to go with, wanted to see if the Verzenio would have any effect on a meningioma I had.
Thank you for reminding me that skull mets are bone mets. I am considering sterotactial radiation since it increased 50% in size. In 3 months.
@marcials1 - At the time they are making the next appt with my mo, I TELL them when I want to do my labs.
0 -
@going2beatthis No, my markers results do not come back that fast. They usually take a few hours especially since the lab for them is at one hospital and I usually get my Faslodex shots and labs done at another one. But my MO just looks at the numbers from whatever previous one I had done. She orders them every time (monthly) which I think is overkill but it is no extra prick for me. The other lab numbers come in about 20 minutes after the draw. I am fortunate that I live near two large hospitals in the same system with full labs. The o hlderospital is more known as the cancer hospital but I am closer to the newer one.
0 -
I have my labs donate same morning as my appointment. Typically 9:00 9:30 and then review with onc or PA by noon or so. My labs are done at the same hospital and they are a cancer only facility. Everything happens fast, it's just that I end up making the lab appointment (reminding the nurse or the onc) that she has not made the appointment and then she gets on it. Just like the MRI I have next week. I had to have the PA schedule the MRI since I already had the appointment on Tuesday with the neurologist/radiologist to look at my skull mets. They scheduled that appointment but yet again forgot to order the MRI. Details details details! Would have been a waste if I went to the appointment and he said "where are your MRI results"? So luckily I stay on top of it and get stuff done. I know they are busy and there is a nurse shortage but geeeeeze come on just make the appointment! Things could be worse. @going2beatthis you think monthly labs is overkill? I don't now what my typical timeframe will be. Right now it's all over the place since Verzenio 1.5 didn't work for me my ANC is low, and we're trying to start over. The hospital I go to has varied locations but each is at least an hour & half a way. @intolight I'll find out Tuesday next week if my skull mets have grown. I've been having pretty bad headaches - did you have them as yours grew in size? I'm guessing I'll be having radiation on them soon. But not sure. @dulcea I think your question regarding brain mets and skull mets has been answered here? Both unnerving but skull mets being in the bone is easier to digest. It sounds like you are going to look into that after hearing that your reports state "no mets in the head and neck area". I hope you get good news on that.
If my headache does not go away by tomorrow morning I'll probably be skipping the graduation event this weekend. Bummed if that is the case. But will stay positive and hopefully wake up headache-free tomorrow!
0 -
@marcials1 I did not have brain mets ever…so far. I was on Ibrance for four years and did well before pregression. Then I was on other things for two years and now my onc put me on Verzenio which I have been on for two years. She said she has success with returning to similar drugs after a break and it seems to work for me. I have a scan on Monday so we shall see!
0 -
@marcials1 - no, I am sorry if you got the impression that I think monthly labs are overkill. I do not since you are just starting out.
My onc did labs every 2 weeks from when I first started meds (Feb/Mar 2021) for 3 months, went to 4 weeks for 1 month and then increased it to every 7-8 months for the rest of 2021 and 2022. In 2023 she increased the length of time between my labs to every 8-10 weeks since the markers were pretty steady. So far this year my labs have been done every 7 months.
0 -
does anyone get a blemish/rash on their face from this medication? My face looks awful and it started up again after returning to the verzenio after a break but also coincides with my liver getting worse so it might be due to that. It’s. Getting me down, looks terrible and feels warm. It’s never really bad when I see my onc, some days it clears up almost completely. My kids asked if I have rosacea.
0 -
@margesimpson I'm sorry you have that annoying side effect. I do get a rash on my leg that can be very itchy at times but nothing on my face. I know it's from verzenio because when I took a week break, it got better. When I resumed, the rash came back. It looks like eczema I guess. Red, itchy and flaky at times. Do you have a dermatologist you can check in with?
0 -
dulcea, thanks for replying- does your rash always appear in the same area? It seems to flare up and almost go away before it happens again. It definitely wasn’t there when I was off the verzenio. I keep seeing my drs when it doesn’t seem too bad so I don’t think they realise how much it bothers me. It’s not itchy but it’s irritating and looks inflamed (red) and flaky and blemishy. I thought it was shingles the first time. What do you use on it?
0 -
@margesimpson of course it goes away when you have a doctor's appointment! That happens to me with my mouth sores.
I was prescribed clobetasol (steroid cream) last year for a different skin issue. I have been using that on my rash which keeps the itchiness away.
Have you tried the OTC anti itch stuff to see if it calms it down? I might be worried that it might aggravate it too. What have you tried?
It does appear in exactly the same spots on both sides of my shin.
0 -
dulces- I’m so glad to hear that I’m not alone! I use the over the counter hydrocortisone cream, it’s very mild, I feel it helps a bit (more than doing nothing at all). I think I’ll ask for the prescription strength one at my next appointment. I’ve taken heaps of photos to prove that it’s real! It’s bad enough that I’m considering stopping the verzenio again. It’s always in the exact same spot.
0 -
@intolight How was your scan today? I'm hoping to hear good news from you!
0 -
@going2beatthis Hi - I didn't actually think or get the impression you were saying that monthly labs are overkill. I definitely am not one to judge - I'm just learning lots and appreciate what I get from everyone who posts here! So thanks for your info! I'm still all over the place trying to figure out when I am going to be on a routine of some kind.
0 -
@dulcea @margesimpson I get a rash in the middle of my back. It comes and goes and sometimes I think it's from anxiety and sometimes I think it's from meds. I use an over the counter that my primary care recommended and it seems to work. Be careful with one particular anti-itch med though. I had it in a tube but I think it's the oral version that you cannot take with Verzenio. Just make sure that whatever you take does not interfere with Verzenio. I'm hoping maybe the moderators will jump in on this one because I certainly am not in the position to recommend or not recommend.
0 -
I had a third brain/skull MRI today for an appointment with a new neurologist/radiologist tomorrow. They want to see if my skull mets are getting larger. And guess what? The nuero/radio doctor cancelled on me this afternoon! He wants me to go see the radiologist who did my hip/back radiation. I am ok with that because I really like him but they told me last week that he was not the one to see - that I needed this new nuero/radiologist. And I have been having headaches for a week so was hoping to talk to this new doc tomorrow. Being the neuro specialist and expert I thought well maybe that is for the best. But nope he decided he doesn't need to see me. He didn't even look at my new MRI to see if there was any progression! And now I don't know when I can get in to see the original doctor. Does anyone else get this run-around treatment? I am so frustrated. I don't need this on top of just dealing with day to day trying to deal. Ugghhhhh!
0 -
@marcials1 Thank you for asking about my scans. There is no cancer showing anywhere including where my last one showed on the spine. I have a little thickening of one spot on my liver, but that's it. I am so relieved. I have had some random pain so I was nervous, but it is all quiet for now. Of course I haven't received any note from my oncologist yet, but I see the results on the portal so I usually get it fast. In this case it was less than three hours later.
1 -
@marcials1 that is so frustrating! My medical oncologist runs my scans and makes referrals on who to see after the scan. For instance, she suggested I see a radiation oncologist for my increasing back pain because we couldn't determine if it due to my ongoing spinal stenosis or my spine met because they are both on the same vertebrae. I would imagine that the radiologist who reads your MRI will make recommendations too if there is any progression. Do you have a "my chart" access to see your results? It is odd that he cancelled your appointment though. Was there a reason? I hope you get things figured out sooner rather than later. It stinks waiting around for information.
@intolight congrats on your scan! That is such good news. Verzenio is working great for you.
0 -
@marcials1 We must have posted at the same time and I didn't plan to ignore you! I am so sorry you got the run-around today. That is not right. I hope you have a plan to get this done. I think I would go through your oncologist office to get this scheduled, and complain loudly while you are at it. One thing I have learned through all this mess is to advocate for myself. It is not my personality, but I have had to learn to do it anyway. It is your body and what the doctors are paid to do!
0 -
@intolight That is awesome news! I'm really really happy for you. Gotta love good news on the patient portal. Hope your next oncologist visit goes well also.
0 -
@dulcea His reason for cancelling was simply that the other doctor "can handle this just fine". No other reason. I have a follow up tomorrow with oncologist's PA and you can bet she is going to get an ear full from me! I know Stage IV is has so many varied levels and stages so if mine is not so serious right now they need to let me know. But I don't believe that is the case. I'm just trying to talk myself down from freaking out. Thanks for your input again - I'll check my patient portal and see if they have posted anything yet. If not, then I will be pretty sure it's not so great news. Will let you know when I find out! Thanks for your support!
0 -
@intolight Thanks. I'm going to get a plan together tomorrow. I have been documenting EVERYTHING and they have some explaining to do. Like you said they need to do their job. Since I lost my job I have the time to keep on top of all of this but I sure don't get paid! I'll let you know how it goes.
0
