Abemaciclib Verzenio for Stage IV
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minewas denied but we appealed and did get a grant to pay for it
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Hello Ladies
On the Ibrance thread, it has been reported that <Z> has passed. One poster read it on a different thread and then posted it on Ibrance. Of course, I do not the the accuracy of this information. I know she had/has lots of friends here.
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Yes, it is true. There is a thread entitled to her.
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Thank you Snooky for posting here. The news travelled fast throughout different threads. This is so sad and I am at a loss for words. Thinking about her family at this time..
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GinaK66
Today I received my first treatment and had no side effects but sudden drop of blood pressure.my face and head started tingling and I felt funny. It happened 40 minutes after morning pill and was fixed by 2 pm. No nausea at all .(I know it takes some times to have diarrhea from other posts)
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totally broken up about z. she was so intelligent, and so incredibly supportive. such a beautiful being dying before her time makes me incredibly sad and angry.
some of you might have already seen the article below in a palbo group. if this works in people--even just in some of us--that would be fantastic.
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Luce - this is why we need you! I think of you as a zar- you do and understand the research and you think out of the box and try unconventional.
There are many others as well, do not get me wrong. I know bestbird and fighterm from inspire. Heck we all offer a piece to the puzzle, really. I think we are all part of the next big thing to come.
What do you think you would try then if you took a break from verzenio? Getting my doctor to agree to a break probably wouldn’t happen. I offered up similar advise taking a break when I was On Xeloda. They seemed to think no you already did that one.
I think we need out of the box doctors. Bad part is they are so busy time doesn’t even allow them any additional research time.
I’m still working on my doctor for thinking about verzenio.
My sister reads and post here sometimes as well. Today she said “ I’m mourning someone I didn’t know personally, zar. You know I had the same thought as well. It amazed me to think how I have become so into this group. How close I feel to otters with my same story. We are all strangers here. I’m not close to and personal with a stranger on the street. I don’t relate to them. I don’t know their life stories and sorrows and fears. I’m so glad I have this place to come to. I’m glad to know I have someone who gets how I feel. I’m glad to have our group of strangers! we are so lucky to have the technology of both internet and medicine.
Sarah
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Glad to read you're having a better time with the lowered dose. Mine has been lowered to 50mg 2x/day. My oncologist stated that there's no better effect with higher doses.... so that leaves me with the question "why use the higher doses then and risk worse side effects if it's not more effective in the first place?". The response I got back was that it's because of how the FDA approval for the drug went through. Seems like an absurdity to me.
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I am on Verzenio+Faslodex+Xgeva. I had to stop the 150mg dose of Verzenio due to horrific abdominal pain, blurred vision, headaches and a sinus infection. I am now on 50mg. I'm doing better (so far) on the lower dose. Will be 4 weeks at the lower dose this week. So far abdominal pain is far less (but still there from time to time), vision is blurred (but not as badly), and I have headaches and another sinus infection. But still far better off on the lower dose ... again, so far. My WBC is low, but my oncologist is not worried about that at this point.
Unfortunately, my go to for pain is CBD and I'm finding information that it's a moderate cytochrome p450 3a4 inhibitor. Apparently at a similar level to grapefruit (which is prohibited while on Verzenio). This is a huge issue for me as on top of the cancer I also have fibromyalgia and arthritis -- and I've found the CBD to be of great help for both. So I've been experimenting a bit.... and so far it appears that I have a 4 hour window between Verzenio doses where if I vape I don't cause myself issues. I seem to need to leave at least a 4 hour window on either side of the Verzenio dose, otherwise using the CBD makes the blurred vision and abdominal pain worse.Is anyone else out there using CBD for pain / inflammation? If so, are you finding any issues?
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Sarah: my expertise is nowhere near Z's, and I really can't give advice, I'm just sharing my experience and ideas at times.
I won't take a holiday but keep on taking Verzenio until it fully fails, devisibg my next step currently. I'd probably try it again two or three months later, though, if I can successfully bridge the interim. Not all mechanisms of resistance are reversible, just one. And Verzenio may be different from palbo. Butthe article still gave me some hope.
This is for the ladies who haven't started Verzenio yet: the JPCE trial is recruiting. https://clinicaltrials.gov/ct2/show/NCT02779751
It combines Verzenio with immunotherapy, Keytruda. There may be a catch: you can't gave had endocrine therapy for metastatic disease yet, I think. Not sure though; I don’t have time to read the criteria.But there's an extended access program, so maybe worth looking into anyway
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gyzmoe's mom; he's cute! CBD May increase your serum levels of Verzenio, which may worsen its side effects. So lowering your dose like you did may fix that, and maybe you are still effectively on a higher Verzenio dose due to reduced clearance. One could see grapefruit, etc., as a way of potentiating another substance. Personally, I'm more worried worried about CYP inducers, which may lead to the drug being cleared too quickly. (Can someone smarter than me verify that?)
I have no experience with CBD but in mice, it has been shown to be immunosuppressant, so I wouldn't combine it with immunotherapy.
Regarding dosing, it’s true that those are largely a guess on the spectrum of probably lowest effective to highest generally tolerable dose, and people get started on highest tolerable dose. And we know from the pill, chemo, etc., that the highest dose may not be needed, or a lower one even more effective and sustainable. But it’s not correct to assume that any given dose works the same as any other dose; I have read studies where, say, palbo’s mechanisms of action were dose-dependent, at least in vitro. But since we don’t know which dose of which drug is most effective for any specific individual, it’s probably best to go with the dose that’s best tolerated
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luce, what did you end up doing with Claritin? What about the repurposed drugs you were looking into?
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Daniel: I started both Claritin and metformin three weeks ago. Am too afraid of side effects of the other commonly-used-in-cancer repurposed drugs at this point, or still evaluating them. My reluctance to take statins, antibiotics, etc., is probably silly given the severity of cancer. But with newer therapies like Verzenio, one needs to take potential interactions that may still be largely unknown into account. For example, i just read in s new paper that's tgf-beta inhibition seems antagonistic with palbo.
If you are interested in repurposed drugs, I’d recommend joining the relevant FB groups, keeping in mind that one of the better ones is censored
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I’m on clinical trial with Verzenio and Faslodex therefore onc checked with sponsors about my taking CBD oil. The answer was “no”. Don’t know reasoning but do know that many other substances that are ingested are not approved, such as pills for hair loss or other additives to the diet. I think the concern is that there is no way of knowing how they may interfere with the cancer medications.
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so this new paper suggests that in breast cancer, tgf-beta inhibition is antagonistic with cdk4/6-inhibition. (this may not be true in, for example, pancreatic cancer.) what do we breast cancer patients on verzenio, palbociclib, kisqali do now? wondering if this may explain why several people i know who were on heavy supplements and repurposed drugs did not have a good response to cdk-4/6 inhibition. i went off all supplements and other meds when i started verzenio but a few months ago reintroduced aspirin and EGCG. now i am wondering whether that's the reason my tumor markers started stalling and are now going up. and how does this fit in with combining verzenio with keytruda in breast cancer, for example in the JPCE trial? inhibiting tgf-beta probably enhances immunotherapy but is antagonistic with cdk4/6 inhibition. i for one will probably go off cOX2 inhibitors again, since those seem to also inhibit tgf-beta. a long list of supplements is also suspect, but we don't know how strong their effect is. i would love to have piggy99 or cure_ious weigh in on this, and we should all ask our oncologists. let's hope i am misinterpreting something here. like i said, i barely finished 9th grade.
https://www.cell.com/cell-reports/pdf/S2211-1247(19)30193-7.pdf
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luce, thank you for your reply. I understand your reluctance towards certain meds. After all dewormers or antibiotics dont sound like drugs one would put themselves on without someone dosing them, cancer or not.
I am already member of all possible fb groups (and was happily surprised to find out your real identity as your posts have caught my interest multiple times) but find them frustrating to sort through with all the information thrown around. Plus I am irked by Jane Mclelland's attitute and mostly stir away from that particular group.
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Hi Luce- I'm not sure about avoiding TGFbeta suppression because so many anti-cancer drugs, like metformin, do this- but in general its a good idea not to try to second-guess what effect a supplements might have on cancer anyway. If your tumor markers are reliable, you could drop the NSAIDs for awhile and see if those improve, why not?...
Resistance to CDK4,6 inhibitors can involve increased CDK2 activity, loss of RB, amplification of Cyclin E or D and increased mTOR/PI3K activity, and different CDK inhibitors (CDK2, CDK7, CDK12) are being developed and tested to try to overcome this problem. Inhibiting PI3K/mTORC (Affinitor, Alpelisib, metformin) is thought to be one of the better ways to get these drugs to work for longer
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As expected (since I am feeling well and my tumor marker CA 15-3 keeps going down each month) a recent PET scan showed improvement in several spots of bone metastases with no new areas lighting up!
So, we are looking ahead to planning some late spring travel. A trip to Canada's maritime provinces for our 35th wedding anniversary was put on hold last summer when I required a five level lumbar/thoracic fusion due to the L1 vertebrae being destroyed by tumor. Then, in November, my upper spine had some interventional radiology fixes.
The plastic surgeon who did the closure on the big procedure used a doxycycline sclerosing technique last month to finally resolve the low back seroma which had plagued me for half a year. Things are beginning to normalize...
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vlnrph
So happy for you! I will have my PET on late May. Hope the same happens to me and hopefully all diarrhea episodes are wort it.
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Cross posting since it's been discussed in a couple of threads. Cure-ious mentioned NSAIDs as potentially helpful in the fight against cancer. This study, although not strictly related to breast cancer but to head neck cancers, points out that Ibuprofen and aspirin might be game changers only in those who have a PIK3C4 mutation
https://www.sciencedaily.com/releases/2019/01/190125094224.htm
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thanks Daniel...
Vlnrph - what an ordeal! I'm so glad you're doing better!
Ailurophile - I'm having a PET in May or June - will be thinking of you. You're in a clinical trial, right?
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Hi Luce only chimning in re statins. My Onc has been involved in a trial with statins & mbc and told me that it was the only drug that he would recommend and even suggested that I start taking it. My gp issued it without question although my cholesterol is only very slightly raised. After 2.5 stable years on L/I with monthly Xgeva shots I have now been taking statins for 3 months am due to have a c scan on Monday so we shall see.....
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I am on day 20 with Abemaciclib and letrozol , side effects kicked in from last week. Still no nausea though. The diarrhea was unbelievable . I've been through HELL. MO suggested immodium Ad and , I still go for Number 2 every 2 hours, my stomach is very upset but stool is not loose anymore because of that, I developed anus fissures, so each time I go is an absolute torture. Right now my main concern is anus fissures. Any suggestion? I am using Calmoseptine for that and I don't see any visible improvement. Please tell me how long does it take before my poor body get use to this treatment if it ever gets used to it at all? My Mo suggested to stop Abemaciclib but my tumor is literally going away and I would never stop the treatment.
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if the diarrhea dorsnt get better after 4-6 weeks, you may want to reduce the dose. I had to. Still worked fine. Diarrhea didn't go away but incidences went way down. Totally worth it for me, given I have zero other side effects. After a year, diarrhea suddenly stopped completely.
I got fissures, too. Not so bad that they require surgery, though.I imagine baby-bottom zinc balm or lanolin may help. I'm using what I have at home, castor oil, which seems to soothe and provide a barrier
Berberine may help with diarrhea without giving you constipation. I wouldn't do more than a two-week course though without looking into it further. It is part of a Chinese remedy I posted about a year ago. (I forgot its name; you may need to search the forum.)I think berberine may be the relevant active ingredient, though.
Epsom salt sitzbad. Wiping with organic baby wipes rather than tp.
Calendula ointment is a powerful all-purpose wound remedy.
I’ve also had great success in the past with piñon balm for wound care. It is a natural antibiotic oubtment
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Luce, thx for reply. May I ask what dose they suggested after it was reduced? Did it do the magic even though it was reduced? I am on 150 twice a day
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I'm on monotherapy; dosed differently. Standard is 200mg. Couldn't tolerate ( I crapped my pants constantly; very severe grade-4 diarrhea), so went down to 150 after 6 weeks. Instantly five; maybe two days of diarrhea a week from there on in. Yes, tumor markers still dropped for a while before stabilizing. You'll probably do just fine on 125 or 100. So odd that your onc would suggest stopping a drug that's working rather than reducing the dose, which is common clinical practice otlined in the physicians' insert.
You can always go up again later
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I felt the same way! why not reduce it rather than a complete stop?
I can imagine what 200 did to you. It should've been awful!
Diarrhea is better with meds, my anus fissure is the one that is killing me right now. I feel while chemo's side effects are just there, 3 days after each round, with Targeted therapy you experience side effects every single day. I am very frustrated
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For those of us with sad bottoms:
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https://www.amazon.com/HEMORRHOID-Manufacturers-Re...=pd_sim_121_13?_encoding=UTF8&pd_rd_i=B003840WFS&pd_rd_r=682acc85-5003-11e9-9a46-450a95c4247f&pd_rd_w=pyRL4&pd_rd_wg=yztP4&pf_rd_p=90485860-83e9-4fd9-b838-b28a9b7fda30&pf_rd_r=1VEFD2RDA5K4G233EZF2&psc=1&refRID=1VEFD2RDA5K4G233EZF2
The good old standbys, preparation H and using a bidet instead of wiping forever, will never go out of fashion
For the ice packs (one is external, one is internal), I put them in a medical glove, coat them with prep H and follow instructions. The external one is better for hemorrhoids that have thrombosed, and are peeking out. The internal one is the best for fissures. I've had both. I like to have two of each product, so that I can use one, then pop the other one in while the first one goes back in the freezer. Most recommend that you don't use them for more than 20 minutes, and I find that the cold dissipates after ten minutes. Having the glove over them makes them easier to place and remove, and to keep sterile.
For extra points, you get to explain to your kids what the heck they are when they find them in the freezer.
If the discomfort transcends cold therapy, sitting on one of those donuts helps a bunch. If you have a travel pillow hanging around, give that a try for sitting. I'm too big bottomed for that, but smaller ladies can give it a go.
It may seem counter-intuitive, but chewable fiber tablets really help keep poops the perfect consistency, whether you are making soft serve or granite stools. They taste like healthy sweet tarts. I also prefer the liquid Immodium; it seems to work faster.
https://www.amazon.com/Fiberchoice-Prebiotic-Fiber...=sr_1_3?keywords=fiber+one+tablets&qid=1553631861&s=hpc&sr=1-3
How do I know all these things? I've had IBS most of my life. I don't even know what a normal stool is.
Good luck to all of us straining to produce a poo baby, or wishing that we could stop making liquid fire BMs.
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blainejennifer
Wow! Tons of helpful tips! Loved the soft serve thing😂😂😂
Thank you! I am going to get those ice packs for inside
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My dosage of Verzenio was reduced to 100 mg twice a day early on the treatment. Have been on it for 26 months and side effects became very tolerable( for me). Also received total response to my liver mets. They are no longer there. Good luck!
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