Abemaciclib Verzenio for Stage IV
Comments
-
Does anyone have any info on luce? It's been a while since she last took part in the conversation about Verzenio.
0 -
Imallright and Moissy, me, too,with the watery eyes. It's nearly constant with me. Tears roll down my cheeks. Sometimes my eyes sting with the tearing. It can be a nuisance, but I'm glad for the drug. Lots of diarrhea, too. I'm on 150 mg. as a monotherapy. Started with 200 mg. in July, but blood counts were too low, so had to lower dose. Tumor markers have been dropping, so I'm hopeful. Hope you all are having good results.
0 -
hi, thanks for wondering about me! i am still stable, according to my slightly-wonky (up a bit one month, flat another, but no longer dropping; generally, my markers (ca15; ca 27.3) went from the multi-thousands into the hundreds before flattening)), but very anxious because the stable phase is a harbinger of getting worse again, eventually (and maybe soon), and there is no other drug i want to take (pi3k and mTor drugs are way too toxic for my liking), so i haven't been posting because i'd rather not think about all this too much. i have found verzenio extremely tolerable, although i had extreme diarrhea at first, and still have bouts of totally watery diarrhea once or twice a week. but that's a minor inconvenience, as far as i am concerned. i was almost dead before verzenio kicked in, so occasionally shitting my pants is minor compared to what i had gone through.
as for dosing, i think people shouldn't be afraid to reduce dose if that make the drug tolerable to them. there is even a chance that a lower dose could work for longer (by not causing the tumor to respond with mutation so fast).this is mostly a guess on my part but i read someone (official) speculating about that at some point. i also think that if you combine it with anti-estrogen therapy (i am not willing to do that), you can achieve a durable response, lasting for years. my oncologist has patients like that. at least the lucky ones.
i think dry eyes come from anti-estrogen therapy, not from verzenio. my eyes have gotten dry since chemo-induced premature menopause. this is common in menopause. estrogen deprivation through drugs will cause menopausal symptoms, obviously. watery eyes, i know nothing about and don't experience
i am having some wild ideas how to possibly make verzenio last longer. long-shot, all, but i'll post about that when i get around to it.
personally, i would NOT pause verzenio, but only reduce dose. and i do not believe it stays in teh body for weeks. i knew its half-life at some point but am too lazy to look it up. it is not long, though. i paused verzenio for only three days one month (to water-only fast), and that's when my tumor markers went up. might be unrelated, but even my oncologist (who had okayed the pause) afterwards said that that could have been the cause. we just don't know enough to know for sure.
0 -
Is it too early to be very encouraged about this drug? From the posts of many of you, we are having good response. Ibrance/Letrozoe failed me, so this drug is really a godsend. I'm feeling very well with this (100mg) and the Faslodex addition and I really don't feel like I have cancer. Considering how crappy I've felt with chemos, I'm really grateful. 6 months- hoping for years.
0 -
Today I was scanned to a fare-thee-well. At least it felt that way because I was in the bone scanner for 90 minutes! I wondered if they were counting every lesion. [Apparently I have a lot of them].
Results on Wednesday. It's been three months and I like this drug better than Xeloda. Rushing to the bathroom every second day is much easier than moisturizing twice a day and finding cushy shoes.
0 -
Hi all,
Just got my bloodwork. TM's rose to 417 up from 3something can't remember exactly. Everything else is normal. Scan prior to this showed no change.
Have been off Verzenio for a week. Just off when they took blood. Not enough time to have any effect from that so I am once again sweating bullets.
Called onc to see what he thought. He suggested this break to stop the diarrhea and give me a chance to have a decent vaca. I have read on the Verzenio sites that a pause is sometimes done to reset the side effects to a lower occurrence.
However, he wants to take blood again in a month but I said to him that I it would not be a logical test if we are trying to see if the V is working or if I am progressing. He does not have a lot of patience and pretty much told me he had done this because I was complaining about the diarrhea. As if he was only doing it because of my caterwauling!! Well gee! I guess having feces running down your leg at unexpected times is not cause for complaint. And, I didn't think I was complaining per se, I was stating a side effect that was causing me some significant problems.
Not a lot of bedside manner. I finally said I would not take up any more of his time (it was about 4 minutes) and that I would make up my own mind. And that it was simply that I was a bit scared by the increase in TM.
Sometimes it would be nice to have a doctor at least try to have some empathy or compassion.
Anyway, he finally agreed that the preferred thing would be if I could stay on the V so that the next blood test would accurately determine if it's helping or if I am done with it.
I am seriously bummed right now. I will restart the V tonight and see what happens. I am trying to get my anus to heal from the diarrhea and irritation caused. If I can get that done perhaps I can handle taking the Immodium if I get the D. It has been seriously painful to have a normal movement because of the pressing on the sore and cracked anus.
Jeez!
Chats
0 -
Chats, your TMs shouldn't decide whether Verzenio is working. You need another set of scans if you think it's not working. TMs measure how much marker the tumors are releasing into the blood. They can go up and down for all sorts of reasons.
I can't believe that being off the drug for a week would change your TMs. Seriously. And if you're having a lot of diarrhea, a break seems like a good idea. Say you start the drug again two weeks before the next blood draw. That would serve both of your needs?
As for the nether regions, try baby wipes? Also could try sitz baths. Sitz baths help with hemorroids so might help with inflammation.
0 -
As for me, boo hiss. My MO called tonight and the scans show progression. Well, what they really show is that abemaciclib just doesn't work for me. So now I get to decide between Taxol, Halavan and Navelbine. Or a Phase 1 clinical trial.
I see him tomorrow to discuss.
Sigh. It's been sort of fun, ladies!
0 -
Pajim, I am so sorry to hear you are progressing on V. That too is my current worry. It seemed to work like a mother- when I first started at 150mg. TM's dropped from 783 down to 480. Dose reduction to 100 mg. then slow decline to 325 and now the last three blood draws show slight increases, 325 to 380 to 417.
Well I got back on the V and am trying a new protocol for the anus problem. I am now using a small plastic enema thingy and if I put some water inside before I have a movement it's much less painful. If I get diarrhea again - none so far - I can use the Immodium and when the stool is dry and hard the water protocol should make the whole thing easier.
I am hopeful that I can control the D while I am on vaca with the above plan. And, hard to believe, there are no bathtubs in my house. So I can't do sitz baths. The onc had suggested it as well. When we get to renovating the master bath, the plan is to put in a tub. I think the people who built my house must have hated bathrooms because they are so not what a normal person would like in a bathroom.
Now it's just a waiting game to see if the increases are valid or just "stable" as they are around the same number plus or minus. The onc told me that he looks at it that way rather than seeing it as a progression. Sure hope he's right. I understand that a jump of 30% is when it gets serious.
As I said I was let down when I read my latest pet/ct as nothing had changed. No more mets. No fewer. Maddening.
Chats
0 -
Stable disease is nothing to sneeze at.
As for sitz baths you can buy these things that fit over the toilet. Fill them with warm water and Epsom salts. Your rear will thank you. Cost of about $20 for both of them.
0 -
I haven’t posted here in quite a while. I’ve been on Verzenio (150 mg twice a day) an LY3300054, a form of immunotherapy since March 2018. Disease has been stable so far. TMs are at 22. Still have a tough time with diarrhea and nausea every couple of days. These are usually controlled by using immodium and zofran. I have my next set of scans on 27 Dec and am hoping for more good results.
0 -
workingmom10, it would be really interesting to know much more about your trial and side effects. i googled it and it looks like it is a keytruda-like checkpoint inhibitor but not actually keytruda? do you have any autoimmune symptoms as a result of the checkpoint inhibitor? what TM are you referring to? does it keep dropping or being stable?
0 -
Ditto to Luce's questions, workingmom!! How interesting to hear from someone on this trial- can you tell us more of how you decided to get in to the trial, did you start on tamoxifen and then Ibrance-Femara? and then progress, or what is your history since diagnosis? Still bone-only disease? was it a few spots or widespread (f you don't mind sharing all that stuff). And for the immunotherapy, what side effects?! And Luce, are you on Verzenio alone?
Also, I was reading that some doctors are concerned that leaving femara and moving to faslodex should be a transition, ie for 3-6 months you might want both drugs. The idea is that removing femara too fast leads to estrogen increase and faslodex cannot degrade the estrogen receptor immediately, so by combining the two you give the faslodex a 'head start' before removing the femara= has anyone heard about this?
0 -
Pajim, I am sorry to hear about the progression. I have heard that these CDK 4/6 drugs sometimes take several months to really kick in, so I guess I am wondering how does one know how long to give it a chance to work....even with some progression? I'm just thinking out loud and sending The Force.
And thank you Luce, Cure-ious, Working Mom
0 -
Quick story that makes me want to get 2nd radiological opinions when there is concern about progression.
I found out that my original L4 lesion on my 5/2018 MRI...the scan that first revealed my met was under measured.
This was discovered after 2 follow up MRIs after CyberKnife treatment in 8/2018....showed the lesion was larger by 50% in one dimension. Lesion was same measurement on both of those scans. All MDs scratching their heads because my PET scan was ok in Oct.....so they sat down and looked at ALL imaging including the more precise MRI I had for CyberKnife planning at that facility....and that’s when it was found the tumor was under measured in May.... so I had not progressed after all.
So, still on Verzenio/Faslo/Zometa.....diarrhea is manageable most of the time, hair is thinning, eyes sometimes suddenly leak!......still wondering about the efficacy of the Verzenio at a lower dose....will ask next month
0 -
hi, cure-ious: yes, monotherapy, by my own choice. anti-estrogen therapy is indicated but i have never wanted to go that route, even before i went into premature menopause from chemo. i don't like life without estrogen. chemo-menopause has been hell (i wouldn't even have done it had i known it would destroy my ovaries. long story): i wake up from nightsweats up to 15 times a night.
i never tried adding keytruda. too worried about autoimmune issues. have you heard any updates from the JPCE trial from san antonio?
0 -
Hi Luce, No news on JPCE, WTF?! they just didn't show up, and nothing reported since SABCA2017!! So are we to infer that the trial is not going well? It's super-frustrating when these trials just disappear, absolutely no idea.
It sounds like Faslodex is working great for you- its been awhile, hasn't it? The PFS of Faslodex alone is supposedly only six months, but there are people on these boards who took faslodex alone for YEARS.
I'm thinking its time to try adding Faslodex to the Ibrance-Femara, why not? My onc will probably say that is not an approved protocol, but I see some people doing it here..
0 -
Chemokaze, very disturbing about the scan measurements being off and that you hadn't actually progressed when the report said you did. Scary. I do see my own PET-CTs with my DH, which makes me feel a bit better. My scan before my last one had stated that I progressed until my MO called the IR. If my MO didn't call, my DH was going to do so. The IR ignored the note I just had a Y90 radioembolization procedure on my liver mets and indicated I had progression when it was only post-Y90 changes - swelling around the tumors (all mets were inactive in one lobe and had a significantly decreased metabolic uptake in the other). He revised the report to state that it appeared the Y90 was working.
Cure-ious, odd that there was no news on JPCE. You are probably right re that not being a good sign as far as the study results go. I took Ibrance/Aromasin/Faslodex and had no issue getting it past by insurance. My MO did that for me because I was pregnant when diagnosed and he said the AI would not do anything for the circulating estrogen that was raging around my body at the time. I would say from observation that once people fail Ibrance, there seems to be a major explosion of the cancer. If that could be prolonged, that could be a good thing. I lasted 15 months on that combo although I didn't start the Ibrance until about month 7 or 8 when it was approved in combination with Faslodex. I suspect I would have lasted a longer on that regime had I been taking Ibrance from the beginning. I may be lucky to have made it that long because I had numerous aggressive genetic mutations / amplifications that indicated that I should be resistant to hormone therapy at that time.
0 -
Hi Cure-ious. I follow this thread because I might request Verzenio/Fas as my next treatments. Why are you thinking of adding Faslodex while still on Ibrance/Letrozole? Do you suspect you are progressing and Faslodex is next anyway? Or do you just want to make sure all estrogen paths are blocked?
0 -
Cure-ious, back in the day (maybe 8 years ago) there were two trials of letrozole alone versus letrozole plus Faslodex as first line therapy for ER+ MBC. This was in the pre-Ibrance days.
When I was diagnosed I chose Femara/Fas as my first line. And it appears I was right as the paper just came out showing an overall survival advantage. Not a large one but still.
When F/F started to fail me, Ibrance had come on the market. MO suggested we just add it on. Gave me another year on the treatment. Insurance paid. I don't recall any wrangling about it either.
0 -
I guess one reason to not add Fas would be if there are clinical trials that might require no prior Faslodex treatment?
Interesting, the Alpelisib--Fulvestrant trial says active but not recruiting, so maybe Alpelisib will be FDA approved shortly?
0 -
It seems to be the treatment of choice with all the new mutation-driven drugs.
"Active not recruiting" means they've enrolled everyone they are going to. Now they are following them until everyone progresses/dies. (Depends on the primary endpoint). The number of people you can enroll in a trial can be strictly (or not so strictly) regulated depending on the drug or device.
0 -
Luce,/Chemokase, I was told about the clinical trial by my first oncologist. When I was initially diagnosed, I was on 6 months of weekly taxol, then tamoxifen only for about 9 months. My tumor markers started increasing and my onc recommended the clinical trial being done by another onc in the same facility. I started the trial in March of this year. The main side effects have been diarrhea, nausea, and fatigue. Recently, I've been vomiting a couple times per week. Not sure what autoimmune side effects would be. I decided to give the trial a try at my onc's recommendation. My tumor markers went from upper 30s when I started down to 17 4 months ago to 22 last month. Scans have been stable with the tumors shrinking in the lymph nodes. There are 2 very small spots on my liver that they are watching but have not grown. The trial definitely seems to be working but the stomach issues are getting harder to deal with especially since I have to keep working full time. (That's a whole another story). I get scanned again on 27 Dec and I am praying for more good results. I have not yet used Ibrance
0 -
Cure-ious: super-frustrating about JPCE. my oncologist had told me before that they were annoyingly tight-lipped. i did not add keytruda at the optimal time, since i was afraid to, and i suppose it would be too late now in my case, but i am still interested in that trial. nothing since the ASCO poster from june. there were only 8 women left in the trial then, but high response rate.
i don't know if your faslodex comment was for me. i don't take any hormone blockers, never have, never will. i am on verzenio monotherapy.
here's an interesting paper about potential combinations. i have some thought on those but no time to share right now.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60508...
0 -
Sandi- My last scan showed "slight progression", two spots on bones that were evident in the past couple scans but have been growing hotter (smoldering, as my onc put it)- not enough to switch but a warning it may be coming to an end- tomorrow I meet with a radiation oncologist as I want them to zap them, mostly to prevent me from getting pain or disability in future, but also just in case it can give me an abscopal effect and boost the ability of my own immune system to do a bit more on the cancer (I know MBC is cold immunologically, however at least in mice, taking Ibrance may enhance the response of the tumors to immune system destruction). I wonder if any others had some warning scans before progression?
0 -
Here are some notable tidbits from the article that Luce posted:
There is profound crosstalk between the CDK4/6 and the PI3K–AKT–mTOR pathways, providing strong rationale for combining inhibitors through both axes to inhibit tumor growth. Combined treatment with PI3K and CDK4/6 inhibitors has also been shown to overcome CDK4/6 inhibitor resistance in ER-positive breast cancer cells. Moreover, the triplet combination of fulvestrant and dual inhibition of CDK4/6 and PI3K was more effective than either doublet. Based on such data, trials examining CDK4/6–PI3K and CDK4/6–mTOR inhibitor
combinations are underway. Some phase I/II clinical trials in advanced
HER2-negative breast cancer include the combination of ribociclib, fulvestrant
and BKM 120 or BYL719 (ClinicalTrials.gov
identifier: NCT02088684).Analysis of the PALOMA-3 trial has suggested that tumors with mutations of either PIK3CA and/or ESR1 can also benefit from palbociclib (Ibrance).0 -
cure_ious. so, my thoughts are these: since pi3k and mTor drugs are rather toxic (i have been offered and refused both; pi3k have diabetes as a side effect (this gets usually prevented or treated by metformin) as well as suicidal ideation; mTOR ones (Afinitor, say) had that MSK onc spin the trials), i was thinking of trying repurposed drugs (metformin) and/or supplements (EGC, say) that work along those pathways to try and overcome verzenio resistance once it arises.(I am currently (since September) stable---meaning no longer improving---which is good but scary, since we all know what comes after that.) there's a list i have been compiling. long shot, but part of my potential strategy (another part might be disulfiram and copper).
0 -
I am thinking the same, is there some supplement I can use to boost a stable response and try to eek out more time on a given treatment- remember the bifidobacterium breve for immune stimulation? Have to go back and look at which strain exactly, but that should be on the list with any CDK4,6 inhibitor, for sure, and could improve the response to future treatments?
0 -
cure_ious: i have been taking bifidobacteria for more than a year, non-stop. expensive, but possibly helpful. i'll post a list of supplements that i am thinking MAY help prolong verzenio response soonish.
0 -
Luce- what probiotic do you use? where do you get it? and yes, I'd love to see any other supplements you take- the bifido might be contributing to the good response you are having to Abemaciclib alone! How do you feel on it in terms of side effects?
0
