Abemaciclib Verzenio for Stage IV
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Emac - Thanks for your response above. It's much harder for me to track responses and comment back with this new forum. Also, sometimes I see things I want to respond to but am just to wiped out to sign on and do it.
Anyway, I want to say that I am real glad to hear that you do not have any mets to ribs and sternum, so that's probably not the reason for your "crackles". Mine definitely seem to come from my sternum area, and only when I sit/lay in certain positions and inhale, so I've assumed it could be due to that fracture and the bones are "rattled" somehow, but then again I'm not so sure. It could just be part of the dry cough that I seem to have acquired with the Verzenio. Whatever it is it seems stable for now.
I was only diagnosed with this stage 4 business in late January, so I imagine that as you described, I am in the throes of first year high anxiety or something, and I agree, it is extremely wearing. I keep trying to calm down, but then I am overcome with anxiety and panic with little triggering. I think all these drugs do a number on your mind as well as your body. I just can't get used to it. I'm just so glad that there are people like you and others here who are "ahead of me" with this diagnosis and can help smooth the path forward. I always appreciate your input!
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threetree, I am seven years past my stage IV diagnosis, so hang in there and believe with faith you can do this. You will settle down and learn more about your body and how to interpret your needs than you ever thought possible. I am not saying it is easy because it isn 't, but it is possible. We are all here pulling for you in every way we can.
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Thank you so much, Intolight! Very comforting and encouraging to hear.
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Thanks for the tip about diclofenac. My wife is now on Xeloda and I just applied it to her feet.
On the subject of cough and pneumonitis, my wife developed a terrible cough on verzenio, and it hasn't gone away. No one has been able to pinpoint a cause, or provide anything that works. It comes on really bad in the evening, or if she exerts herself. Makes for very poor sleep. She saw a respiratory specialist, but they prescribed her a nasal mist and won't see her again until the end of July. It's not working.
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Husband, Please update how your wife is faring…
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Thanks for asking. She had another catscan or xray about 3 weeks ago, and visually, whatever was in her lungs has cleared up. However the symptoms continue. As soon as it gets to around 6 pm, she starts coughing. It's a wet cough, I can hear the phlegm in her lungs. It may well have had nothing to do with the verzenio, but we will never know. She had covid around 8 months ago, and that was probably what triggered it. She has switched to xeloda for her liver mets, and unfortunately after 3 cycles, her tumor markers continue to rise. We had a lot of confidence in the xeloda, because when she was on it 5 or 6 years ago, her tumor markers were hammered down to near normal levels. She only quit using the xeloda because she had an opportunity to use palbociclib. So, if she has developed resistance to xeloda, it seems it was while she was on palbo or abemaciclib. Isn't that a bit unexpected?
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Hisband, I am sorry the Xeloda is not working for her this time. It didn't work long for me either. Pablo works the same way as Verzenio (Abemaciclib) so it's possible they did something to her lungs… All the meds react differently on everybody so there is no way of knowing for sure. Verzenio works well on me cancer-wise (normal levels with no activity) but we are unsure whether it is the culprit that caused all my problems last month (extreme fatigue and whole body aches). I will go back on it next week and see if it starts to cause havoc again. I did end up with pneumonia too but I also had a UTI at the time so there were too many things all at once to just blame it on the Verzenio. Like you said, we will never know. We shall see… I have an MRI next week because of one little spot on my spine they want to check. Need to catch it quickly. Tumor markers are rarely trustworthy for me as they are still normal.
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Husband, I agree, this sounds like residual Covid. What are they doing for that nowadays? I thought repeat boosters were supposed to drive that away. Everyone seems to handle V better than I am- moved to the full dose but now it irritates my residual neuropathy (which came from Ibrance) and is making me quite dizzy at times (it seems that might be getting better?), tho at least I am not having the killer fatigue people have described…
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Intothelight, I wish you well on your scan, and hope you can restart treatment without the fatigue and aches. That sounds terrible. Say they found something on the scan, would they spot treat it with rads? I asked my wife's oncologist about that and she poo pooed the idea. I thought that it wasn't uncommon if its just one spot?
Curie-ious, I hope the lowered dose does its job without the neuropathy. My wife has residual neuropathy from her first encounters with taxotere, and things seems to stir it back up from time to time.
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husband11 I had a spot on my spine before and they were going to spot treat it before they discovered it was only a hemangioma, so my guess is yes. It is one of the questions I will ask my oncologist Thursday. I feel pretty good after having been off my oral chemo for these past six weeks. It is hard to gear up to more treatment if/when needed.
For all my USA friends, stay safe, and Happy Independence Day.
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I got four years out of Ibrance also.
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Hi. This is my first time on this Thread. I am asking this question for a "real-life" friend that just got put on Verzenio. I have not been on it— I was on Ibrance, and now on Lynparza.
She started Verzenio a couple of weeks ago. She asked me today how long would the Big D last. I told her I thought indefinitely. Not that the side effect goes away in, say, 3 weeks. That her body does needs time to adjust to the new med, but she also may need a dose reduction. I do not know her dose now.
I told her to call her MO and report the frequency of the BM's. She is taking Immodium, but it is not helping. I told her to drink fluids/electrolyte drinks to replenish the fluids lost.
Is this what I should have told her? Does the diarrhea get better on its own over time? Should she be doing anything else?
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Candy, what you told your friend was correct. She should call her MO. I took a dose reduction from 150mg twice a day to 100mg twice a day and do much better with great results. I have been stable (no active cancer detected) for eight months now. The Big D continues but at a manageable rate and Imodium does help. It did calm a bit with time, but she should not go too long. You are correct she needs to drink plenty of water and electrolytes. I drink Gatorade and this does the trick for me.
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I've been on Verzenio for about 2 months now, and I am so fortunate to not have encountered the D at all. I agree with the others that lots of water and electrolytes help - I've been drinking a container of coconut water every day, and also consuming at least one banana a day now for a couple of years, because I kept winding up in the ER with electrolyte imbalances. Not anymore. I also do occasional Pedialyte. What I think has probably been the biggest reason for my not getting the big D is that I always have fresh, organic co-op type sauerkraut every day as part of my lunch, as it is full of probiotics. ( Stuff like S&W in a can won't work.) Additionally, I have a bowl of full fat plain probiotic Greek yogurt with fruit (banana included), nuts, and flaxseed in it, most every afternoon. I think the water, electrolyte drinks, and probiotics might be what is needed. Best of luck to your friend!
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Candy,
I'm no longer on Verzenio, but interventions that helped me with the diarrhea were 1. Imodium (slows intestinal motility) I got down to 1 Imodium a day or 1 every other day 2. Fiber to add bulk to the stool (options: Fiber Con tablets, Metamucil (but has sugar), Konsyl Daily Psyllium Fiber (no sugar - this what I used) 3. Dose reduction (definitely helped me) 4. Lots of fluids i.e. water to keep well hydrated and if diarrhea is significant then electrolyte drinks 5. Kefir ~1/2 cup 2-3 x day - Kefir provides probiotic 6. Greek yogurt daily - Greek Yogurt has high probiotic count. Diarrhea and many oral meds tend to disrupt the gut microbiome so it needs to be actively maintained, replenished, and fed with a probiotic - I'd say daily. Hope your friend figures out what works for her.
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Candy - I second what many have said here. I didn't get diarrhea very bad but the first few months were the worst in terms of adjustment and then I got 3.5 stable years on it. If it's that frequent I would have her contact her MOs office. Like Weninwi said, fiber is going to help bulk up liquid stool. I am also a fan of yogurt or tablet probiotics.
I just popped in to say my journey with Verzenio has ended. I have lymphogenic spread to my lungs and will be starting on Piqray as my next line of treatment. I wish you all many stable years ahead.
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Has anyone else had issues with their insurance and specialty pharmacy using the Verzenio savings card? I was required to sign up with SavOnSP program with Express Scripts and Accredo to be able to use the copay card. It was a ridiculous mess to begin with, but I finally received the medication and have been refiling it with the app. I was very frustrated that using the savings card did not count toward my deductible like it had the year before with another insurance. Then I noticed the price for my "non essential" medicine went up but I was responsible for the same copay. That was covered by the savings card. Now I get a call from Accredo saying the savings card had reached max or something. When I asked why they were still charging the savings card when I went over out of pocket max months ago, they said the call was cutting out and then pretended to call me back. She said hello ma'am? And hung up. My connection was fine, on wifi. Later I called Verzenio savings, who transferred me back to Accredo, who now said everything was billed correctly. What the??? Something is fishy and I see online J and J has sued them for something similar. I can't afford lawyers and generally think the legal system is corrupt and useless so what are we supposed to do? Make our own Verzenio? It shouldn't cost so much to begin with. How do they all sleep at night, scamming sick people?
Emac877 very sorry to hear about the progression and hope your new treatment helps knock it down to stable.
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Thinking of you All, and @emac877 sending you all positive thoughts and hugs that Picqray is the one for a very long time.
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Anybody out there? I realize that so many less people visit this forum since the switchover now, and that there is a much smaller pool of people to comment, but if any of you out there see this and have anything to say, I would greatly appreciate any thoughts, comments, or suggestions.
I've been on Verzenio (150mgX2) now for about 12 weeks (close to 3 months) and Fulvestrant for a little more than 3 months. I had the first scans to check the effectiveness a little less than two weeks ago, so it had been about 3 months of Faslodex and 2.5 months of Verzenio at scan time. The results were really confusing to me because the CT noted some things better, but some things worse. It also noted that my bone mets were "sclerotizing". I initially thought that was bad, because I'd heard before that there are 2 types of bone mets; osteolytic and sclerotic. I initially thought the sclerotic thing meant I was getting new and different bone mets (I've had osteolytic), but after reading around, it looks like bone mets that become "sclerotic" on treatment, can be a good thing and that it means the erosion of the lytic lesions are filling in. Then the bone scan results said that a lot of the same old things lit up plus there were a couple of new spots. I didn't think these results were great, and decided it was a mixed bag and didn't know what to think, but thought maybe it was still too early to tell how well the drugs are working.
Saw the oncologist yesterday and she didn't even think it was a "mixed bag". She thought it showed that the drugs aren't working and started talking about possible IV chemo. She said that the sclerotic things seen on the CT weren't necessarily a good thing given that the bone scan lit up so much. I told her how I'd heard that it can take 3-6 months sometimes to see if this combo is working and she said 2 months was enough. She also said she could do a test for the ESR1 mutation and I might be able to switch to Elacestrant. I asked her if we couldn't stay the course a while longer and she reluctantly agreed to scans again in 1 more month. She also told me that I could not go from Verzenio to Ibrance or Kisqali because if one didn't work, the others won't either. I get that they are related drugs, but I have seen on here where many have done OK with a switch, at least for awhile, so again, I'm not really on the same page with her.
Additionally, my tumor markers have improved notably, so I don't understand why the tumor markers would look so good, yet the scans don't look very good. The CA 15-3 has always been in the normal range, but went from almost out of normal range down to low normal. The CEA was above normal and climbing and is now down to low normal.
I would greatly appreciate any input from any of you about this issue, especially hearing how long it took for you to see positive results on scans from this drug combo. I'd also like to know what anyone might have to say about tumor marker results in relation to scan results, the possibility of going from Verzenio to a related drug like Ibrance or Kisqali, and whether you think a second opinion might be warranted in this situation. Also, I'd be interested in any comments or thoughts related to any of this. I hadn't expected this and assumed that I would at least get some sort of time on this combo, but that's not what this oncologist seems to be seeing. I'm really depressed and scared about the idea of just moving so fast to IV chemo. Thanks to all for reading this long post, and for any thoughts you might have.
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Threetree, I think things have been quiet here because the automatically generated email notifications haven't been working until today. Anyway, hopefully you should begin to see more people here.
I can't answer your questions about the mixed results, but I do have a couple of comments about some of your other questions. First, I think your oncologist's comment about not switching to Ibrance is warranted. I was on Ibrance before (it worked for four years) but there were a couple of years and three different drugs inbetween Ibrance and Verzenio. My oncologist said she had good results using the same type of oral meds (i.e. Ibrance and Verzenio) only after a good long break. I am doing well now. So you might do well on Ibrance after other meds are tried first.
My tumor markers have never been reliable. When I was first diagnosed Stage IV my tumor markers were just high normal but my cancer was extensive. Now they read normal and I am NEAD. The change in numbers is minor.
I have never felt I needed a second opinion, but it sounds like you are unhappy with your oncologist so a second opinion might help you. I am not the one to tell you how to go about this, but I am sure there are others on this site who can help with this. I think it is normal to question the results of a new med after only three months. That is usually when a trend is seen that it is or isn't working. But waiting another month should help you. It depends on whether the cancer is fast or slow growing. I don't know in your case.
This is just my layman's thoughts. I am no expert but I have been doing this for seven years. Good luck!
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Intolight - Thank you so very much for your comments. They are very helpful and insightful - give me some more food for thought. Wow, you've done well for quite some time, so have quite a bit of experience to share.
I have heard that tumor markers are very unreliable and I'm trying to keep that in mind. I wonder sometimes why they even bother to use them, and I know some don't. Just hearing your oncologist's comments on something like how she saw better results between these related drugs after some time had passed, is a little bit like getting a second opinion. I just can't go "blind faith" on what one person says about most anything. I really like to have lots of opinions and ideas to weigh and then see what fits for me.
Really glad to see that you currently have good tumor markers and are NEAD. I hope that lasts for a long, long, long time!
(I haven't seen any notifications of postings from BCO since the switchover. I don't get any emails from them anymore.)
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Threetree - First, based on the disconnect you feel with your oncologist, I can see getting a second opinion. I'd want to feel comfortable with the plan moving forward. Hopefully, this would not offend your current MO. (It shouldn't, but my first, interim, MO was sensitive about it.)
Next, my second (and my favorite) MO was initially concerned because my CA 15.3 TMs spiked (216 --> 879) in 6 weeks, and took two full months after that to start dropping. I didn't scan at 2 months. At four months (after my TMs started to drop), my liver tumors were about half the original size, and I was NED at 7 1/2 months (TMs still at 77). He commented that he thought Verzenio seemed to be slower starting than his experience with Ibrance. He also commented that while not all people's TMs are sensitive, mine seem to be. All this to say, as a layperson, I question whether scans at 2 months would have shown much improvement.
I've heard, also, of people circling back to a CDK 4/6 after a different treatment - only going directly from one to another if they course not tolerate the side effects (e.g. severe nutropenia or diarrhea).
I've been on the Verzenio/anastrozole for just over 3 years, and my last scans suggest recurrence may be starting.
Lastly, my current MO (we moved to another state), is considering 1-2 pill oral meds before IV chemo, but that could be based on my success on Verzenio.
I hope you find a way to have peace with your tangent treatment plan
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Seeq - Thank you so much. It's nice to hear your story and your thoughts about mine. I'm not sure if the issue is the Verzenio or the Fulvestrant and I don't know how they can tell the difference. Maybe one of them is working just fine and/or it does just need a little more time before the benefit shows. Re my oncologist sometimes I wonder if I don't just react negatively to things she tells me that I don't really want to hear by arguing a point with her or looking for more information. The problem is that sometimes the things she tells me just don't line up with other things that I read and hear both here and elsewhere.
I'm glad to hear that you got 3 years with the Verzenio and anastrozole. That's the sort of thing I was hoping for and frankly expected. I undestand some people don't respond at all apparently. Maybe I am one of them? I hardly expected that, especially after the tumor markers showed such quick improvement. I'm glad you have some oral med options before IV chemo and I wish you all the luck in the world with those!
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Threetree- 2 months is probably too soon to know- my TMs are very predictive- some people's are not. I think that if you feel like what she is telling you doesn't go along with what deep in your heart you feel or have heard- you should get a second opinion. They can take awhile until you establish a second opinion MO. the actual numbers of the TMs are not as important as the % change- There are people with extensive active cancer and normal TMs and some who have very little cancer and TMs in the hundreds. For me the TMs rise before the scan shows much.
My MO always asks me if her plan sounds good to me- and is liberal about continuing a little longer if results are mixed or delaying scans or treatments for a trip etc. She has been practicing for awhile so I think is less rigid in some areas.
There are other oral drugs- some only if you have a certain mutation- but, Xeloda is an oral chemo that I found very tolerable and worked for 2 1/2 years.
Good luck! ( if you are in a big center you might be able to get a second opinion with one of the other doctors at your center, which may be quicker and easier.)
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Nkb - I really appreciate your post and it's very helpful. Wish I had an oncologist who asked me if I was OK with her plan and had some flexibility. (In this one's defense, she is somewhat flexible some of the time.) She tends to be very rigid and by the book, generally though. I'm actually taking a trip next month and am trying to avoid starting Zometa near the trip time and she's "so-so" about that too and just seems to think I'm not taking this seriously enough or something. I've already put the start off for a month because my apartment building elevator is out for a month and I don't want to risk having a bad reaction on the first infusion with no elevator. I'm in a pretty large city with other facilities that treat cancer, so maybe I could find someone local for a second opinion. Last spring I tried with Mayo for a virtual second opinion and it pretty much fell through, as they aren't doing virtual things since Covid has calmed down, and there's no way I'm going to travel there. I don't know if I could get a second opinion at my center, which is really big and considered the "best" place around, but I'll look into that. I've heard that some places don't allow a second opinion or switch to another dr at the same clinic. I do worry about ruffling feathers too, but …
I had asked the oncologist about Xeloda and she said she wouldn't see it as a next step. She seemed to think Paclitaxel would be the better way to go, and then maybe later do Xeloda.
I'm really glad to see that you are doing as well as you are - looks pretty good to me!
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Threetree, If it was me, I'd switch MOs, not liking anything she is saying and who gets paclitaxel before Xeloda?! Is this someone who specializes in breast cancer?! At the least get a second opinion and tho it can easily be done online from anywhere, I'd do it locally looking to switch. - what hormone therapies have you had thus far? What about genetic testing, if its real progression, why would they talk about treatments without trying to figure out the cause of the progression. If you had an ESR1 mutation, for example, it would mean the cancer is still very endocrine-sensitive, you just need an oral SERD to get rid of the mutation and then back on the hormonal treatments.
In my case, I went from Ibrance-Femara to Ibrance-Faslodex then had neuropathy and switched to Verzenio-Faslodex.
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Cure-ious - Much appreciate that you have offered your thoughts; thank you. Yes, I think I will at least look for a second opinion. I tried to start something like that with the Mayo Clinic last spring, but they had stopped doing virtual second opinions since Covid was not so big anymore, and they will only do a 2nd opinion now if you visit in person (not gonna happen). I'm spending the week-end looking up names of some local people I might be able to check with. This onc will be out beginning in a very few weeks for maternity leave and the next time I'm seen there, it will be with one of the other dr's there. I'm hoping that person might offer some sort of opinion also. I've also heard from some on the Faslodex thread who said they too have heard that you need more than 2.5 - 3 months to get a good idea as to just how effective these drugs are.
Also, one of the people on the Faslodex thread said that at some point you had posted/cited something that said that when these drug combos don't work, it is usually the Faslodex that is failing, not the Ibrance or Verzenio, etc. Do you have that information that I could see? I could have the mutation, but I seem to remember that with this latest biopsy for the stage 4, I wasn't nearly as ER positive as I was at the beginning. At diagnosis I was 95+% ER/PR positive. The bone biopsy they did in March came out as PR- and much less ER+, although the onc said it was still something they would treat as if it were ER+. I suppose it could be that I'm just not all that ER+ anymore so the anti estrogen doesn't really have an effect; or else it's the ESR mutation.
I too have had a little neuropathy, but I've figured it was from the Faslodex. It comes and goes, but was pretty bad earlier this week.
Again, I really appreciate your input and want to thank you for the time you took to respond.
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Threetree- lots of people convert to PR-, I have had some fluctuations in the % ER and sometimes bone biopsies are not accurate depending on how they are processed. I wouldn't worry about that right now- any + is good.
My MO did say ( and I think we all know this) that lots of experience in a field lets you see lots of ways people respond to drugs- it is a very complicated disease and we are all different. Striving for a perfect response to a drug will have you running out of drugs in no time. Your tumor markers went down!
It is convenient that your MO is going on maternity leave so you will for sure have a new MO and some time to search around for a better match before she gets back- it's your life, not her ego we need to worry about.
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Nkb - The oncologist also said something about most anything positive at all would be treated like a "full" positive cancer. You've touched on one of my big fears too, i.e. about running out of drugs too soon. I agree that striving for "perfect", which I think my onc tries to do, isn't necessarily the way to go, given the range of people's disease and responses. I remain confused about the tumor marker situation, but so many on here claim that theirs are all over the map and that there's no real consistency with the scans, but then there are those like you who have a real noticeable pattern and correlation with them.
I too thought it rather fortuitous that the oncologist is going out on maternity leave (baby's due in 3 weeks) before my next scans will get run and read. It will definitely give me a chance to hear what some others might have to say and I can decide whether to switch. The center I go to now is very close to me; just a 5-10 minute drive up the hill, and if I go anywhere else in town it will require some more significant travel for sure, along with tight parking garages and more, and that's one reason I've stayed with her. The other places are in a much more dense area of the city here.
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Re: Big D, I take 2 imodium with my morning verzenio dose. I was traveled to a a place I hadn't been since before covid with very hard water and for the first time ever there, I wasn't constipated there🤣...got home a week ago and now I am taking a 3rd imodium a few hours after the first 2 most days. Been on V for 3 months. I started reduced (100) because I am, as my sister says, a "super- responder ". Was on and off Ibrance for 2 years, between surgeries and radiation. We kept lowering the dosage. Each month my ANC got progressively lower. Even on lowest dose at 18 days on 10 days off, my ANC was too low. So trying verzenio now. Onc said if I don't tolerate this one well I'll move to a new class. 3rd month and the fatigue that came with the low ANC is here. Onc mentioned my kindney& liver numbers to nurse😬. Scans soon, if NEAD I will take a big medicine break!!!
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