Abemaciclib Verzenio for Stage IV
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cure-ious
I forgot to mention my triglyceride is elevated with Ly.
Wow I am bummed that the research won't be continued. I was in her office on April 30 and the only thing she said was we are signing a new bill of right that won't effect me.I have to go through my new papers though...
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Well, nothing for you to be bummed about, you are responding like a champ!! And, if it turns out that the drug is not a keeper, better to learn about that now right at the beginning, rather than after taking it potentially for years and your liver having to deal with whatever side effects might have eventually shown up?
If you decide to see how the scans look on just the Abemaciclib-Femara combo, you'd go back to your primary and drop the trial, is that how it works?
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I believe that usually, unless a study is stopped for safety concerns, they let the patients responding stay on the drug until it stops working. Phase out for ethical reasons rather than cliff drop. My trial said something about that.
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I believe it's due to a Budget crisis
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It's an interesting question- here you are doing marvelously, so why stop? Unless you develop side effects or other problems of the drug, and if that happens then you have no problem dropping it. In the meantime though, you may be benefitting greatly, all you can tell is that not enough people benefit to a sufficient extent for the company to decide to keep it. That decision has to do with benchmarks for profitability, what the competion is doing, market share, yada yada...
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cure-ious
I agree with you. I definitely don't want to be in it if it is hurting me in any way. The thing is, what if I am getting results from it and dropping it by lilly effect my treatments and the wonderful care that I am receiving right now for free. I checked my papers and it's like a 15 years contract.
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Hey, there's some optimism- they expect to be following you for fifteen years on this regimen?! Love it!!
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Haha you are right! I never looked at it that way. Btw I just received an email from my doctor and this is her reply: the trial is not closed. The company has decided to not do additional trials in the future with the drug, but it is not closing this trial. You will still be able to get the treatment
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yep, that's what I thought- they can't have patients who are reponding on a drug and then remove it, that would be awful!!!
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Always glad to hear great news!
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Glad you can continue the drug, Ailurophile!
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Hi All,
May be joining you. My MO is looking into access in Canada. Verzenio was finally approved on April 9th but we’re not sure of the criteria. I’m on Faslodex as my second line hormonal treatment but there are signs it may be wobbling a bit. I think the idea is to add Abemaciclib to the mix to kick things up a notch. Ibrance didn’t work - anemia was too severe.
For now, I’m watching and learning.
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Verzenio (abemaciclib) and Faslodex (fulvestrant) starting soon. I see that diarrhea and nausea are side effects. Doc recommended immodium and ordered an anti-nausea prescription. Any helpful comments from you? Does the diarrhea subside after a while? Should I buy immodium by the case? Maybe get some Depends? Dietary recommendations?
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luce, how are you doing?
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yes Luce...I too, would like to know too how you’re doing and what’s going on with you...
I hope all is well..
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Daniel, meow: thanks for asking. presently prepping for oncology appointment (i have one every 4 weeks) this afternoon. i am still on verzenio, upped to 200mg. i think my oncologist wants me to seriously consider xeloda but i don't want chemo, so am still looking into repurposed drugs and supplements that inhibit mTOR and autophagy, to try and milk more time from my beloved verzenio. i lack the discipline to really apply myself to the task, though, maybe because i am still waking up from nightsweats 10+ times every night. i'll ask my oncologist for those antidepressants that have been recommended here to me by you and others. although i do think it's all connected, and i am not sure all antidepressants are cancer-safe. i started researching THAT and it's yet another rabbit hole in the warren. i'm great at collecting puzzle pieces but not good at putting them together.
ill have blood drawn for TMs this afternoon so will see in a few days if maybe my markers are stable again. so far, they've been rising, some months dramatically. i don't think i'll make changes before ASCO, though. (apropos, i recently came across an abstract from last year's ASCO that called for high-dose desloratadine. I had asked my oncologist for high-dose before but had never seen that abstract. ow i have leverage. deslo is an autophagy inhibitor, and i want to take more of it than the standard dose of 5 mg i have been on for a few months.)
also seeing a new naturopath next week. (my very nice naturopathic oncologist felt in over her head.) i want to see if she can help with repurposed drugs, since portland does not have an integrative oncologist. it's not ND territory either, tho.
permanently constipated now, presumably from verzenio. and my diet is high in fiber and all that. i almost miss that year of crapping my pants.
i hope your wife and cat are well!!
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Good to hear from you!
Ugh sorry to hear about your persisting hot flashes. I hope you can soon find a solution because I am sure they are literally hellish. Did you consider talking to a gynecologist maybe?
It was oncologist day for my wife too today. Wondering if yours runs CYFRA19 as a TM. Ours says it's specific for lung cancer so it could give information regarding possible lung mets. Not sure the rational works for me but oh well.
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interesting about that lung TM! I'll ask him. I definitely have lung mets, and maybe that's a good way to monitor them. I get CEA (which I think relates to bone mets) and CA 15 and CA 27.29.
I've been trying the ladycare magnet for the last 6 weeks but no success so far. Gyno is a good idea but I really don't know if there are any answers that generally work when HRT is out. I ought to try the antidepressants that are helping your wife. I'm reluctant to take anything that causes weight gain, though, since I wasted my teens and twenties on eating disorders and get easily triggered. Menopause has caused me to gai weight, and I'm so ashamed, I'm avoiding friends and family, although I look normal ( just not skinny, which was my normal). Crazy, I know
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oncowarrior,
Usually significant diarrhea starts 2 weeks after you start verzenio. Mine started when my doctor thought I am totally tolerating it well. I couldnt go to pick up my daughter from school without a trip to the restroom at her school. It was going on for 2 weeks besides serious heart burn and upset stomach. I never vomited but sometimes felt nauseous (usually with morning dose). With nausa dairy helped me alot. Having some yogurt was usually an immediate relief. For my diarrhea I started to use imodium AD. onco duggested to take 2 with first signs of diarrhea and 1 every 2 hours as needed. Well it helped a lot but then with an already scratched anus due to diarrhea, I developed an awful super painful hemorrhoid this time due to hard stool. be careful not to over dose yourself with imodium. after 8 weeks, my side effects were gone and I am back to normal. Hemorrhoid stayed with me, so I have to use the cream every now and then. Low energy was never a big issue for me. I am fine most of the days with dom exceptions
Just don't forget, never have verzenio with empty stomach or you will vomit. I learned my lesson hard way.
Also if you need to go out just have some filling but light snack and postpone the meal for when you are back home and have access to toilet. Usually you have to go an hour after each meal.
Buy a cleansing bottle from Amazon, wash yourself with warm water rather than wiping That can hurt. My stool was pure acid and that burning was killing me, till I learned to wash. Generally you will be fine after you get used to your new med. You can use over the counter for heart burn. I have a strong chewable that one of the ladies suggested it to me. Its magical. Hope it goes really well for you!
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Luce- I hope your appt went well. I think others have mentioned this previously on the thread, but I wanted to add that after leaving Verzenio, I also have been taking Xeloda. Ihave felt better on Xeloda than any other previous treatment. I have virtually no side effects and normal energy levels. So if a time comes that you have to leave Verzenio, you may find that you could feel even better on Xeloda. Your mileage may vary, of course and I know you are well-informed on all options, so your decision will be well thought out. Wishing you well!
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Moissy: thanks for the xeloda endorsement! i am glad it's working so well for you. and it was great to get an update from you; i had been wondering how you were, including yesterday just before you posted!
(saw my oncologist yesterday, whom i get along with extremely well, which is unusual for me and doctors, frankly. he totally respscts me and my strong opinions and my research, and tires to help in any way he can. never rushes me, either. and easily admits when he doesn't know the answers. awaiting TM results (and he said he'll ask his lung-cancer colleague about that TM), so no idea yet how i actually am. symptom-wise, i never really got anyplace near normal again (i can barely climb one flight of stairs), but the improvement verzenio had given me was still major since i had been within days of dying when it kicked in. i would get out of breath from slowly lifting one arm a tiny bit while lying down.)
and, by the way, my oncologist does not like ANY fat-weight-gain either, in HR+br. He was quite happy with me being super-skinny. he agrees the side effect of weight gain that some drugs have would be a problem. and i LOOK slender-to-normal (but probably have relatively-high body fat for my relatively-low BMI since i lost so much muscle when i was dying, and haven't been able to build any since, since my lungs make me exercise-intolerant. so it's not just me being nutty when i am afraid of weight gain from xeloda or losartan, although my past eating disorders are part of it.
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ASCO 2019 Abstracts....
...are now available online!!
So, lets get started. Here is the update for the JPCE Trial many of us are watching (Abemaciclib and Keytruda):
https://meetinglibrary.asco.org/record/161801/abst...Bottom line: ORR 14.3% at 6mos, doesn't sound fabulous to me?
hopefully someone more familiar with how these trials are done and what the numbers mean will chime in...
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cure_ious: Can't find anything on JPCE in the 2019 abstracts. My oncologist is going to ask in person at ASCO, though. The answers to his email inquiries have been too vague to offer any information orguidance.
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Hi Luce- It should be mandatory that every clinical trial present their results at least once a year; we populate these trials and as taxpayers we support them through the NCI and deserve to know what they are finding!!
So far, I don;t see anything exciting.
The Alpelisib-Faslodex PFS is 10.9 months as a secondline treatment (vs. 3.9 mos for the faslodex alone); PFS was longer (22 mos) for those who were endocrine therapy-sensitive, but so was Fas alone (19 mos).
Another group looked at patient records and said just taking Ibrance with Faslodex, after progression on Ibrance-Femara, was good for a PFS of 11 months, so this looks similar to the above option.
The TRINITI-1 trial combined ribociclib with AA, following I-F. At six months eval the PFS was only 5.7 mos (33% made it one year); presumably those numbers may go up with longer time, but if not this doesn't look very good.
No data at all on venetoclax-Fas trial, no JPCE or PACE, no CDK2 inhibitor from Pfizer. Meh.
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cure_ious: thanks for looking through the abstracts for us! disappointing, although i hadn't had high expectations. do you have any feelings about sacituzumab govitecan for HR+bc?
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Cure-ious, thanks for looking up the abstracts for us. Its disappointing thats all there is though. I was looking forward to something, if not game-changing at least better PFS so we can all hold on for that elusive game changer. Was really feeling so low this week, could have done with some good news. Sigh.
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luce--not sure what new naturopath you are seeing, but Care Oncology Clinic has US offices, works with re-pruposed drugs and does long distance consults. I'm on a Facebook page group where lots of folks are using the Care Oncology Clinic re-purposed drug protocols with what appear to be great success. https://careoncology.com/faq/
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thanks, I'm well aware. I am not fond of care oncology and while the repurposed drugs approach is sound, the four drugs they use aren't enough. They are running a medical trial, effectively, which their patients pay for. The drugs and dosages are available online. I think it's unethical to stick with fourdrugs for all patients if many would benefit from more or others. Jane Mclleland's approach is more comprehensive. Still, I'm uninterested in taking antibiotics and statins, although convinced her full protocol would at least slow down most cancers. I'm only looking to extend Verzenio. My new ND probably sadly won't know any more than I do at this point (my last Nd never charged me for consults because she felt she was learning so much; naturopathic oncologists here in Portland are generalists, not breast cancer specialists. And I was her first patient in CDK 4/6 inhibitor), but i like her (she used to be my acupuncturist at OHSU), and I want to spread out the burden of prescribing repurposed drugs so it's not all on my oncologist
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luce- Immu-132 seems to just be a snarled mess right now, no US drug launch expected till 2021 or even 2022,
https://www.fiercebiotech.com/biotech/iannone-walk...
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what a shame! It attracted my attention in last year’s ASCO coverage, and I knew about their difficulties, but both my oncologist and I were hoping it would be accessible soon
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