Abemaciclib Verzenio for Stage IV
Comments
-
Girls, A year and a half ago when I was into alternatives, all the "experts" recommended Trans glutens (mixed mushrooms) have you tried that? They are suppose to be expert on helping your immune system rebuild, and of course pro biotics, and chopped fresh garlic every morning. They recommended the best brand of "transgutens" but my research is at my home and I'm staying with a friend (new) who graciously offered me her home, support, etc. She's a god send. She nursed her dau. and DH through chemo and although I felt bad to impose on her, she did not take no for an answer. So here I am, with the most caring, spirit filled Christian lady that I have ever known.
Pat.....your favorite saying constantly is in my thoughts, "God's got this". And to that, a bit Amen.
0 -
Snooky:I'm trying to source PSK from Japan. Used to take a lot of American turkey tail but did not seem to help in my case. Back on some mushroom supplements but standardized Japanese ones may be more potent, for a variety of reasons I have no time to go into right now.
0 -
cure-ious
There are 2 other women in her clinic who are under the same treatment. MO says their cancer is melting literally. She also think I will have a good response but she said it can definitely be different from person to person.I saw in my Bill of right papers that this treatment is available to 20 women only, worldwide, 5 of them through UCLA. I try to be optimistic but the fact that it's just 20 of us in the world makes me uncomfortable or as my husband says maybe I am so lucky to be among those 20. Well, only time will say.my treatment starts on March 7 but right now I am doing all kinds of crazy pre trial tests that UCLA wants me to do and pays for it. I will post as soon as I have an update.
0 -
Wow, thank you for all of the preceding data!!! I’m overwhelmed, but so grateful for your research, knowledge, and passing it on to us 🙂. Now, I need to slowly read it all again...and again....BTW, I love the trial name Morpheus!
0 -
I like that name too, Chemokaze!!
Actually, Ailuro, your MO is maybe giving us some news here, because to have two patients with tumors "melting away" in a phase 1 trial is a big deal- most of us are lucky to get to "stable", defined as not getting any bigger, but you are describing what are called partial or complete remissions, so no wonder she is grabbing patients for this trial!!
0 -
Luce - I so hope you can turn this all around.
I have followed this thread off and on for a year to learn how it is working. I have even told my doctors this is on my list for next choice after ac chemo. They seemed surprised but I don’t think they know much about verzenio since they don’t have anyone on it.
I get your tired of research and looking and hoping and trying. I read and read but my knowledge is nothing near you and many others on this site. We learn so much from you and we need you and your knowledge. Your helping so many of us even though you may not know it.
The Claritin is getting interesting.
My uncle say this on tv and many of you may have seen this already but it can be a refresher than if not. Read up on ASCO tapur. I read some of it but need to get back to reading more.
Keep fighting
Sarah
0 -
sarah, you made me cry, sweetie. i in turn am super-grateful to those of us who got an eductaion and are putting it to good use: cure_ious and piggy, for example. i am buried under 1,000 puzzle pieces of clues (i am pretty good at digging up info) but with i had someone like that sit next to me and put them together. i know we won't have all the pieces, nobody does, but maybe fitting enough together will let some of us live long enough until those last ones are found. i respect mainstream oncology, i am only alive because of it, but i feel right now, approaches may need to be combined.
still sifting through all that info from cure_ious on trials also. had a bit of a nervous break down last few days; just caving from feeling overwhelmed and alone.
even if /when verzenio fully quits on me, i'll attempt to keep sharing any insights i might have gained from having been on it, or what i am trying next.
need to run now buy dogwormer. i don't have a dog. it's for me. i am starting to think adding that may be an idea. UC san diego is adding mebendazole, a wormer, to keytruda as part of their precision oncology effort. so far, not in breast cancer, though (that may not be the cancer that worm medications like fenbendazole and mebendazole would be most effective for), but it seems low side effect, and my pet store has a sale today, and there could be a synergy.
0 -
Luce- I can imagine doing all you do alone! It has its times though, sometimes I just want to be left alone!
Did you get and try the dog dewormer? You are brave if so!
Stay strong and keep fighting.
Sara
0 -
I ended up only getting treats for my neighbor's cat. still weighing risks/benefit of supplements and repurposed drugs. so many moving parts: all need to be synergistic or additive not antagonistic, for example. but we all need a contingency plan: verzenio rebound is a thing, from what i have been reading lately. very scary.
0 -
Thinking of you Luce. Sending you The Force
0 -
I started the dewormer last night. I still need to get some vit e to go with it, apparently for absorption. I got Safeguard 1000ml bottle from Amazon. I think it's the most cost effective. I am on abraxane, which has brought my marker down from 2200+ to 187. I don't want to simply wait for it to stop working. We will see what happens!
0 -
chemokaze: thanks!!
Hlb: careful with E! It's one of the antioxidants generally negatively associated with chemo and such, as far as I'm aware. And fenbendazole might not be the most effective repurposed drug in breast cancer. But one of the least-toxic ones, so that's good. Anyway, there are many more, but this is not the place for that. I only post what may be synergistic with Verzenio here, or what could be an exit strategy when it quits. But I don't want to post anything too off-topic. Are you in any of the FB groups for repurposed drugs? Jane mclleland's is the most informative but she sometimes censures what doesn't fit her approach, so you may need to branch out for more balance. And while the E is part of joe tippens' protocol, it may not need to be dosed as high as he did, according to someone else on yet another site. And Tippens had Keytruda with it. It stands to reason that the two may be synergistic. But supposedly there are some success stories with his protocol without Keytruda. No breast cancer ones that I'm aware of. But, yes, I think we all need to be more proactive and integrative as long as SOC offers no cure. I feel—and regret—I got complacent. Good luck!
0 -
Thanks luce, yes I'm in Jane's group as well as one for repurposed drugs run by Jana Downing, and another recent one about sharing experiences with the book. I was kind of reluctant about the e but in one of the studies the fenben only made the difference with the vitamins. I'm also on berberine and loratadine and just ordered bergamot for now. Also reluctant about the stations due to liver probs.
I always get complacent when treatment is working. Sucky pain in the arse dz.
0 -
Hi Luce and others......trying to help. You all might already know this, but then again maybe you don't . So wanted to share. Months ago PATMC from Ibrance recommended a couple of books. One "Unlocking the Heart on the Art of Healing" is a great Book, lots of lesson for me with my co-morbalities (Sp) The author is Bridget Hughes.
Inside this book she discusses one of the first who combined conventional and alternative therapys. Her info is highly researched. But to get your hopes up is not what I want. IBRANCE and like drugs may well not be in it. Still there must be clues that You (luce} and Curious can ferret out
SO, look for : "Become an Epgentic Engineer" by Jeanne Wallace PH.D; CNCLuce you are one of the bravest women that I know. You're sense of drive is inspiring. I pray nighty that you find what you are looking for. Of course, most of the things that you and Curious talk about are way above my level of comprehension. I pray Go d will bless you
SUe
0 -
Thank you for those book titles!
0 -
HLB You're so very welcome. Here is another. Published in 2014 and on the New York Times Bestseller List.
"Radical Remission" Surviving Cancer Against all Odds; by Kelly A Turner, Ph.D (purchase paperback on Amazon for very little.) This author searched for undocumented cases that cancer went into remission for no apparent reason. In most cases, Drs. had given up on them. Yet they lived Cancer free. Turner wanted to know why.
I'm still in the middle of this book, and love it. Now, if you do a search here on breastcancer.org, you'll find that one cancer patient has remained cancer free for (sorry forget how many years she quoted) Some, of the comments poo-pooed this book as not possible.. Why can people not think outside the box? Our bodies have the capability of healing. Plants do it. Animals do it.. Ok no soap opera.
This book will get you thinking. Wis
hing you all the best in your "journey". (hate that phrase)
God Bless
0 -
Oh, should have added, put "radical remission in search box"
0 -
Snooky thanks again, I put the first book in my amazon cart. The reviews are so over the top it must be mostly friends writing them lol! But it sounds pretty amazing so why not.
I have Radical Remission and I love it! Those are the kind of stories that are so helpful to us, even if it's just to get out of the doldrums, they always work. I'm always surprised at how many people not only poo poo that sort of thing but are downright hostile. Hellooooo! We are not being cured!!
Greg Anderson wrote a similar book years ago called 50 Essential Things to Do if you have cancer. He did the same thing by searching out survivors and is a lung cancer survivor himself. He has a charity that gives gift bags to kids with cancer. I met him one time because he used to live here in Hershey and he's a super nice person. He signed and gave me a different book that he wrote.
Sorry for the off topicness.
0 -
snooky: thanks for recommendations! My library didn't have them, so I also purchased the first book on Amazon last night; besides your endorsement, it got great recommendations and was only $6 used (and they have several left at the price). I haven't found the second title yet, only her website. I'll look later from my laptop.
I have done pretty much everything mind-body I am aware of and that I could afford. Read RR, books on reprogramming you subconscious, hypnosis tapes, etc. Mostly after my primary, actually. I even experimented with the substances tested at NYU, Johns Hopkins, and elsewhere that Michael Pollan described in his 2015 New Yorker article, which he expanded into a book last year. Frankly, those methods have been the most helpful to me. But nothing until Verzenio (on-topic post!!) so far seems to have slowed down the disease, and nothing has made me make peace with its eventual consequence.
That said, I suspect that the way my nervous system got wired from before birth does have something to do with developing cancer, via immune-system modulation andsuch. So im still trying to resolve the complex PTSD that's been hampering every aspect of my life.
Thanks, but I'm notbrave at all: I was too chicken to add Keytruda when I could and should have. I generally err on the side of too little treatment.
0 -
Luce- is the keytruda only in trials with Verzenio or was it approved already? i often thought as well immunotherapy was a last option choice. So if I took keytruda with verzenio could I then go back to other chemo agents? I do think I read keytruda would open the immune system for the Er+ cancer for future treatments. I think that's what someone was saying here on the thread earlier, making me think that I can go back to chemo after keytruda
My questions about this are bc I'm on ac chemo and brought up going to verzenio when I'm done. It didn't sound to me like it might get approved by insurance going back to a hormone blocker after a chemo agent. I will have to ask again at next appointment bc we went over a few options and it seems to be gem or halaven.
I am just Er+ pr- her2-
Any help is great, thanks
Sarah
0 -
Sarah: Not approved, I believe.my oncologist sourced it under compassionate us for me because I was actually dying. If you aren't, you might not be able to get it. The Verzenio made me better, so I ended up not adding keytruda. I was too afraid of its autoimmune side effects.
Keep following the JPCE trial. The combo may well get approved by the time you need it. From melanoma trials, we know that preloading with Verzenio for 3-4 months seems to work best.
0 -
I just had a bone biopsy to see the markers in my distant mets. We've been assuming that my mets aretriple negative since they were discovered at the same time as my triple negative IBC in 2011. But the pathology report shows them as strongly E+ and P+, Her2 negative. I suspect this must be a met from my first cancer in 1999. Yikes! It's still good news.
So, my MO is taking me off Xeloda and putting me on Femara/Verzenio. I need F/V for Dummies.
So, any advice is really appreciated.
0 -
Wow WinningSoFar, those nasty cells stayed dormant for all that time! But now you have some other options.
For me, the 150mg twice a day Verzenio was too much and using Imodium/loperamide to treat the diarrhea made my intestines revolt. After a dose decrease to 100mg, I can control the loose stool with FiberCon (2 tablets daily with plenty of water). My tumor marker has been going down and this afternoon I had a PET scan to confirm that the regimen is actually working.
0 -
Thanks vinrph for that advice. I've put it into my phone so I won't forget it if it turns out to be a problem. I'm starting on 150mg.
0 -
Anyone throw up 2 hours after taking 1st dose of Verzenio? I am not off to a good start
0 -
Gina: I'm sorry that happened to you. Not unheard of. Consult with your oncologist, specialty pharmacist, or both. I have never thrown up from Verzenio but my morning dose always makes me feel nauseous to some extend. I don't eat breakfast, so take it on an empty stomach. I would try taking it with a fatty meal or snack, if you haven't already done so, which may prevent nausea and could even aid absorption. My post-dinner evening dose never gives me any trouble.
0 -
i am new to verzenio but my trick is to always take some sort of milk prior to the pills, can be yougurt or cottage cheese but no funky bfast
0 -
I counted my Verzenio before it hatched. My Medicare insurance denied the drug. Anyone else have this happen?
0 -
Gina mine starts this Friday, I will keep you updated
0 -
Same on Medicaid. I had to get it through lily cares, the patient assistance program. Your oncologist ought to help with the application
0
