Abemaciclib Verzenio for Stage IV
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I had my first bone scan Tuesday and will go over the results with my MO next Friday. My dose has been reduced to a 150 mg in the am and I cut the other 150 in half in the evening. I think it has helped. I was only out of work on Tuesday with half the day having the diarrhea that makes you feel like a rung out rag. I take one lomotil every evening. I was taking one in the am and one in the pm but I was so tired at work I cut back to one at night. I just have to figure out what to eat now. I have been doing the brat diet and I tried chicken noodle soup last night but my stomach bloated up so I'm back to the brat diet. I will try some chicken breast with rice this weekend and go from there.
I'll let you know about the bone scan as soon as I talk to my MO.
One other thing, I have been walk/jogging - one minute jog then two minute walk x 6 and doing the elliptical and I am so very happy to be getting the exercise. It feels like life is becoming normal or at least starting on the new normal.
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jenny,
thanks for the update. i'm feeling you; i have been having GI distress (serious stabbing pain causing me sleepless nights; total inability to eat for about 26 hours, and very little since; diarrhea---i crapped my pants for the first time in memory yesterday. i was home since i'm housebound but it still wasn't fun. i know, diapers, but their environmental impact makes me blanche, so i haven't ordered any yet---weakness from the above) for a week now, after taking the reduced dose for weeks with few serious side effects (diarrhea once a week or so). sure, maybe it's not the abemaciclib but, say, bowel mets or something i ate, but i still think the trials/inserts somewhat minimize abemaciclib's GI toxicity and the incidence of long-term diarrhea.
taking imodium is not an option for me since it makes me to tired to get out of bed.
glad you can exercise! you'll probably figure out a diet that works for you, too, over time. i have not been able to pinpoint any foods to favor or avoid.
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I was on Verzenio as a mono agent starting in mid November 2017. By mid December I had to stop it. One issue was liver toxicity and the other reason was a blood clot in my leg.
I hadn't seen anyone mention these side effects, so I wanted to give everyone a heads up.
I did not have the GI problems, but I also have an iron core stomach, thankfully. 😊
My MO informed me I will not be able to take any of the cdk 4/6 targeted drugs. Bummer.....
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CL: I am aware of those potential side effects. Sorry you experienced them. Where was your blood clot, and what were your symptoms? Some of my cancer symptoms mimic those of a blood clot, so that becomes a very grey area in my case. My liver function looks fine so far.
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Dear Sisters,
I am on Cycle 2 Week 1 of 150 mg abemaciclib (with fulvestrant). I am not having the g-i issues so far for which I am thankful. I do have the lower appetite, quick feeling of fullness, and lost 5 lbs. below my normal "low" in the last 2 weeks. Dr. wants me to talk to nutritionist since she doesn't want me to lose more & I have appt. I just get full so quickly. What have you been told for maintaining weight?
Also between weeks 2 and 4, my platelets reduced themselves by half. I hope we can stop this trend. If things go down more, Dr. says I will go off the drug for a week then start a lower dose. Have you had to adjust treatment due to CBC factors?
My biggest issue has been an overreaction to the beta blocker I was on, mostly for protective measures with the herceptin. (I went from her2+ to her2-, 4-19% of us her2 gals have this discordance between primary and secondary). With the beta blocker dose I was on with herceptin, I became extremely lightheaded, dizzy, sedated feeling. BP in the low 90's for systolic. Cut that dose in half, still same results. Cut that dose in half, so now on 1/4 what I was taking, BP normal. Most of the lightheadness is gone, but I still feel somewhat sedated. Different than tired. On a couple days where I skipped the morning beta blocker dose I felt fantastic. I am not supposed to go off this suddenly and do need a wee bit of something, it seems, so will be watching & examining this. Has anyone else had issues like this?
mzr119, are you still 100% liver resolved? My onc was ecstatic to hear your status on that! As was I and I wish this for you always!
Mazie, I see on 2.12.18 you were stable. Is that still the case?
I am so glad and fortunate I've found all of you. It is such a comfort to me.
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck.
Radiation to left iliac wing November 2016
2005-2018: Herceptin with femara, fulvestrant, aromasin, tamoxifen.
2018: Tumors to liver, now her2-. Off Herceptin, Now on Abemaciclib/fulvestrant
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N_R: i, too, am too thin, whatever that means. (frankly, as long as you are not losing excessive amounts of muscle (i did since i cannot exercise, and couldn't eat anything at all for prolonged periods of time), i don't think that's a huge problem.) small frequent meals is what i was told. does not work for me since i am on restricted time feeding most days. putting extra fat in or on your food? vaping cannabis?
i took myself off a beta blocker (80mg of propranolol) last month. i just stopped instead of tapered. i was fine other than a few days of headaches. my oncologist said that doing that was not dangerous. i think the warning to not go off it suddenly (in someone who did not actually have hypertension to start with; mine tends to be too low also, and i was taking the propanolol for other, medication-related reasons also) is in many cases merely to prevent those headaches. if you need a smidgeon, maybe a natural beta blocker would do the trick? i researched those a few years ago, and remember hibiscus flowers (as tea) and celery stalks (juiced if necessary) act like beta blockers. there are probably many more.
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Luce,
Thanks for the good recommendations on natural beta blockers. I didn't even realize there were any! I can exercise---if I don't feel lightheaded!
So now that you are off the beta blockers, is your bp running in the normal range?
Did it become too low after going on the abemaciclib? I wonder whether there is an interaction there.
Thank you so much for your input; it's very helpful!
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck.
Radiation to left iliac wing November 2016
2005-2018: Herceptin with femara, fulvestrant, aromasin, tamoxifen.
2018: Tumors to liver, now her2-. Off Herceptin, Now on Abemaciclib/fulvestrant
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N_R: yes, low normal bp. abemaciclib does not seem to affect my bp. but it only gets measured once a month or less--i don't have a cuff at home.
there is a cdk 4/6 inhibitor group on FB. i haven't found it very valuable yet (most people on there are or have been on the other ones, ibrance and kisqali) but that does not mean it isn't.
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Watching closely. Will be moving on to new tx soon and hoping that this is an option.
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Welcome bigbhome.
Luce - how are you feeling? Thinking of you today.
>Z<
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Thanks for asking! Nothing to report. I have been having diarrhea for two weeks now on the reduced dose. No noticeable effect, so far.
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Blech.
>Z<
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Has anyone been told whether or not Allegra interferes with abemaciclib? We are starting allergy season here and I usually rely on Allegra! Additonally, is there anything else, food-wise or pill/supplement-wise, etc., besides grapefruit products that you've been told to avoid due to interference with abemaciclib? Thank you!
Diagnosed 2005 Stage IV ER+ her2+ with mets to spine, chest, neck.
Radiation to left iliac wing November 2016
2005-2018: Herceptin with femara, fulvestrant, aromasin, tamoxifen.
2018: Tumors to liver, now her2-. Off Herceptin, Now on Abemaciclib/fulvestrant
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A lot of people take loratadine (claritin) on ibrance, which is a similar drug to abemaciclib. The goal is reducing some side effects. No conflict there. Not familiar with allegra. Good to think these things through.
>Z<
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Nanns_R: You might want to look into which herbs/supplements inhibit key drug metabolizing enzymes. I know grapefruit is not the only one, only the best-known one. This is all easily googled. The hard part is deciding for yourself how cautious to be. Best of luck!
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I am about to get on Ibrance in addition to Anastrozole 1 mg I am currently taking.
How does success rate of this drug compare to Ibrance.
How do side effects compare.
I am going to ask my oncologist about Verzenio have appt this Monday to see oncologist was going to sign paperwork to get on Ibrance.
But if Verzenio is less side effects than Ibrance. Mostly dierhea and it gas a good success rate I am going to certainly ask oncologist about it.
Has anyone been on Ibrance which could not tolerate or had not worked and then gone on Verzenio.
I am her2 neg hormone receptive positive and had mastectomy and radiation less than year ago felt sm lesion in area radiated which tested positve cancer just had tests: ct, bone and PET told found cancer in right lymph nodes...so now stage 4 now...no operation is planned just told about Ibrance to take in addition to Anastazole.
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Dear KCSpanielMom,
Welcome to the BCO community. We are sorry for you diagnosis and we are glad that you reached out to our members. Here is a link to further information about Verzenio from our main site. The information may help you to formulate questions for your doctor. Let us know if there is anything we can do to help you to navigate the boards. We hope you will stay active here and keep posting. The MODs
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KCSpaniel - Ibrance is generally the first CDK-4/6 inhibitor prescribed unless there is a reason like a low neutrophil issue. Abemaciclib hits the gut more than Ibrance but the WBC's less. Why is Ibrance prescribed first ... it was approved first and it is the better understood drug. I think abemaciclib is the stronger drug based on the trial results I have seen. That supports doing it first. However, that fact would also support holding it for later as a second line treatment.
I'm the first one to debate my oncologist on treatment strategy, but I don't think any particular treatment sequence for CDK 4/6 inhibitors is clearly supported by the data. On this one, I let my oncologist make the call. I choose try his patience with other issues where the advantage of changing his mind is more important.
>Z<
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Ibrance is used for first line therapy. So if you qualify for that go for it. Lots of people I know have had good luck with ibrance. You also need to use it with an ai. My white cell count really dropped on Ibrance.
Verzenio is for mets and you can use it in combination or mono therapy. I had blood clots and elevated liver enzymes on verzenio
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I still have diarrhea almost every day (on days I do not have diarrhea, I don't have bowel movements at all, probably because I am too empty), even on the reduced dose, so may need to discuss reducing further when I see my oncologist next week. If my application for the Keytruda patient-assistance program gets approved, I'll be starting IV Keytruda next week. This would be more exciting if I hadn't already tried immunotherapy (Opdivo and Yervoy). I may still respond to either that and/or Keytruda and/or Abemaciclib, but so far have not noticed any change for the better. (I do not monitor with imaging since I am very symptomatic and will notice by feeling better when something kicks in.) I started Abemaciclib monotherapy in mid-January.
(Yesterday, MIT released a horrifying study on a possible reason so many of us become stage 4 soon after breast surgery. It makes total sense. I would any stage-1 person who is considering surgery encourage to insist on anti-inflammatories.
http://stm.sciencemag.org/content/10/436/eaan3464
Actually, knowing what I know now, I would not have surgery at all, but have the primary tumor cryoablated.)
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Luce - I think about you daily. The immunotherapies that we have now don't work very well on their own with MBC and particularly ERPR+ MBC, but the combination with abemaciclib is potentially a powerful treatment. There was an article last year in Nature on this.
Fingers crossed Keytruda comes through ...
>Z<
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I had three treatments of Taxol after my stage IV diagnosis and then a scan showed a new liver tumor. At the same time, I switched insurance and where my care is located, so got a new MO. She put me on Verzenio as the next treatment starting in January. We never discussed Ibrance. I am her first patient on Verzenio.
So....got the results of my first scan since starting. Mixed results. My liver tumors have decreased in size, but there is a new met on my spine which is tiny. Meanwhile, a previous spinal met, and some small lung mets where not evident at all. So it's working, but not perfectly. She recommended that we continue for another 3 months with the idea of giving it more time. I'm ok with that since I finally have the diarrhea under control and feel pretty good, other than fatigue.
Luce, I am sorry that the diarrhea is still plaguing you.
Donna
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luce: I am so sorry you are having daily diarrhea. I think of you quite often and am cheering for you to feel well! I wanted to thank you for your recommendation to google which herbs/supplements inhibit key drug metabolizing enzymes. You've opened a whole new world for me! Also thank you for the heads-up about the Facebook group for BC mets sisters on CDK 4/6 inhibitors, https://www.facebook.com/groups/744174808937047/, which I've actually found very helpful.
zavorka: Thanks, too, for your comments on Claritin. I did find out that Allegra is fine. Claritin and Zyrtec make me spacey. My pharm onc looked in one of her interaction databases and all is well. Yayy! I did call Lilly first, but they said they don't have any info on that sort of thing unless it presents itself during the clinical trials.
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Nanns_R: take what you find with a grain of salt. as far as i know, the grapefruit disclaimer is based on white grapefruit, and white grapefruit is almost impossible to find these days. then there is opposing evidence that shows that ALL citrus inhibits CYP3A. (this is something i dug into a few years ago and am not strongly motivated to revisit.) we all have to do our own due diligence, and then make best-guess decisions. i for example decided against turmeric/curcumin supplements while on abemaciclib. and i think it's a reasonable guess that some of the strong GI toxicity reactions may be due to ignorant ingestion of foods that are strong enzyme inhibitors.
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Lice, I hope you are getting some relief from the diarrhea!
Z, I hope that all is going well with you! I am way behind in reading, too much going on in daily life right now! I have a question for you. I reread the topic at the top, because I thought that at some point, someone said that the Abemaciclib works better if you have a form of chemo in between the Ibrance and the Abemaciclib. I have burned through Faslodax, Letrozole and Ibrance and am having progression. Still only in my bones, but more mets are growing. We are going to maintain the course until June 12, to do another Pet scan and then a bone met biopsy and then onto another treatment. I know that a lot will depend on the biopsy results, no reason to think any changes have happened, but I was wondering if I should consider a course of chemo and then go to the Abemaciclib, and possibly retry Faslodax. What do you think? Am I on the right track? Also, 2 New mets, 1 in the left hip causing pain. We discussed rads, but I had those to that hip last April and it was not a good experience. I was wondering if I am a candidate for the sbrt? I am a Mayo patient inn Florida, so it would probably be easy to use the Rochester Mayo. Otherwise, I will go outside of Mayo, since my last experience was not good. After having two wonderful previous radiation treatments elsewhere, I am not inclined to give them a second chance. Anyway, if you are up to it, I would really appreciate your input!
Claudia
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Sharing scan results after three months on abemaciclib. Liver lesions have all shrunk by 5 mm. Stable bone disease. My Onc high-fivedme 4 times! It's a win!!
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Congrats mostcapable!! Let's hope we continue to get good results!
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congrats mostcapable.
bigbhome - It's a very personal thing, but my gut is that it makes sense to alternate between very different treatments and that would support chemo before going back to any targetted therapy like abemaciclib or faslodex. Abemaciclib is among the top of my list of treatments, but i went with abraxane first because I just got off a CDK 4/6 inhibitor. the cancer sort of adapts to a class of drugs with time. if you challenge it with something completely different for a while, it might become more susceptible to a class of drugs you have already done.
In the case of hormonals, there is data to support this theory. The trials show that it takes 3 years off of hormonals before you see a statistically significant proportion of patients re-sensitized. but we are not a population, we are individuals. i support anyone who has a hankering to try a particular path. everyone's cancer is individual. what you are contemplating makes sense.
Got my second Abraxane IV today. I am fasting 2 days before and one day after. ends tomorrow morning. Surprisingly functional but not posting much. Keeping up with family takes most of what I got.
>Z<
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Thanks Z! I read a little bit of the liver mets thread and I am sorry about your progression. I had no idea! Dealing with Dh's accident and mil's situation, I have been deep in the s?$t. Really have not had much time to worry about my progression. This week is taking care of my baby loves (dgs)! They have brought me back to my happy place!
Thank you again for your thoughtful response. Please take care of yourself and know that you are in my thoughts and prayers everyday!
Claudia
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I started a clinical trial of abemacliclib and immunotherapy (I think it is called LY00304) (It's a long number) on 13 March. So far, I have had episodes of bad diarrhea in the evenings after dinner about every 3 days. It subsides after I take 2 immodium. I just checked the trend in my tumor marker results and I hope the trend is better. I get scanned on 10 May to see it the trial is working. Here are my tumor marker results since Nov 2017. In Nov, I was taking tamoxifen only.
15 Nov - 14.85
20 Feb - 35.48 (scans showed slight progression in bones, referred to clinical trial onc)
28 Feb - 40.15 (washout period)
13 Mar - 44.27 (started trial)
12 Apr - 46.32
Although they still went up since the trial, at least the trend is slower. My clinical trial onc also said to not put too much stock in the tumor marker results as other factors can influence them other than the cancer. The jump of 5 points in one week really freaked me out! I'm just hopeful that the abemacliclib is working. I'm also curious if it takes a couple of months to fully kick in and be effective.
Christine
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