Abemaciclib Verzenio for Stage IV
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chats, do you know if Art is harmonious with Xeloda as well? I started taking the art during my off week from X but on Monday I have to get back on it.
Congratulations on the great results you got
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M,
What I read in my research on Art was that it was also used in conjunction with chemo drugs. I personally am adding it to my Fas/V mix along with my Turkey Tail mushroom caps and Reishi tea. If I were going on Xeloda I would continue.
To the best of my research knowledge there was nothing that indicated any problem with Art and any cancer drugs as it apparently does not interfere with them. I even had some communication with the nurse practitioner of Acredo where I got my Ibrance and now V. When I was on Ibrance I asked if there was any contra-indication regarding Artemesinin. She looked at the list they have of all negative drug or supplement interactions and there was none in regard to Art. So I took the Art with the Ibrance and Letrozole. As I posted above the Letrozole (or Fulvestrant) was found to be positively affected when combined with the Art.
As a side note: I am very curious to see if my white blood cells continue to improve since I have been on the Turkey Tail. As I said above in clinical trials it did in fact increase wbc.
Thanks for the thumbs up. I am suddenly feeling better LOL! I was pretty much in the dumpster when my numbers kept rising. This is the third downward trend so it has given me a big mental boost.
Chats
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hi gals! i rarely post bc I’m so stinking busy I never get back to reply.
My quick history is de novo March 2016 er+ her2 neg. started with none only. After 18 months had multiple liver mets so started Xeloda nov 2017 and failed that they claim. My numbers we’re up but all in normal range but a tad bit over for the liver ast.
I went for a second opinion at university of Iowa, not impressed at all. They basically second my dr opinion at my hometown and missed two bits of info on my charts.
I have been off Xeloda 7 weeks now and getting to the point of miserable. I’m just starting my third opinion at Rochester Mayo Clinic and hoping for a good trial! They say they have one good one in mind and I’m wondering if one option is the verzenio? I am so hoping it is.
My question is, without rereading all details, do u girls have bad liver mets and it seems to be working.
Luce - I know i don’t get scans and such so how are u feeling back at the 200?
Chats I’m aboit same build as u so maybe I should opt for the 100 to start. I might push for this one of ot isn’t what they were thinking for me. I also see alisertib, I think, sounds like an option. That was pulled off for a different cancer but is a phase II now in breast cancer.
Hoping to know tomorrow! Hope I get to join in on the side effects end!
My dr rocks, he has a personality and I have to say his one personality beats the three total oncs I had before this. I feel his attitude helps my attitude be more positive. He should give lesson to all the dry oncs. He also doesn’t seem to outright say “the standard of care is” grr shakrit up let’s slay this dragon!
Sarah
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Skitzblitz: I went up to 200 for five weeks, until yesterday, when I ran out. So am back down to 150. But also had blood drawn yesterday, so if my tumor markers plunged in the last months, I’ll go back up to 200. If not, I may stay on 150 because I have been feeling generally crummy lately. Not with typical Verzenio side effects, but from medical menopause, I think, and maybe the cancer. I don’t have liver mets (well, I didn’t last November when I was last scanned), but pretty much everything else. So maybe a lower dose is just generally gentler on my taxed body, as long as it’s still doing the job. Who knows? I am almost ready to give up on research and guessing what might be best. Good luck
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Luce- I agree on research I read and read and blah, don’t know if it helps me any more.
I was just told i was highly er+ and didn’t know that. I just know er+. I have been on Lupron shots as I’m only 46. For some reason the dr told me I prob don’t need Lupron and longer. I don’t get that bc would estrogen still feed my cancer? I am asking him again today.
I just feel decent overall body except the liver. I hate to take abraxane and wipe out so much more than I need to at this point. That was what my reg onc and second opinion onc recommend bc that’s the standard of care.
Cancer wears on one and wears us down.
I hope it continues to work for you. It sounds like such a good pill.
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skitzbitz: I’m 46 also. And I’ve done nothing but deal with cancer for the last four years.
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Luce- it is a long haul! I’m pooping out At two years. Love mets are taking a toll on me. I’d like NED just once for awhile, I’m not greedy. This will be my third line now in two years years and I thought er+, ductal was the slower growing, huh
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hello ladies , I finally had to change from Halaven to Verzenio. I got septic, most likely from an exfoliating massage. Port got removed & antigen levels started to rise. I just finished week 2. I thought I couldn’t get diarrhea due to always being on the constipated side from opioids. Well 4 days in severe stomach cramps woke me up & u can guess the rest. I only had pepto-bismal on hand, so that helped a bit until I got some Imodium. I re-read the info from the start of this thread & wish I read it before I started this drug. I was cutting down to 2 mg, which wasn’t helpful. Today was my 1st day without a BM, of course I haven’t been eating much. My mets are to my bones since 2013 & a new spot on my liver.
One of the main reasons I am posting tonight is to ask about shoulder pain. I woke up this morning w/severe right shoulder pain. The pain is worse when I take deep breaths. I did vacuum 2 days ago and am assuming I injured something. But the pain being worse w/inhalation concerns me. I have had right rib fractures also, could be referred pain. Anyone else ever experience something like this?
Also, I was doing protein milk shakes, My daughter suggested I stop the dairy, so no shake last night, & no severe cramps today... She may be on to something.
Sorry to go on so long. Oh, I did Palbociclib as part of a study & lasted 18 months, that has been at least 2 years ago. Thanks for any input. Sue.
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hello ladies!
Update on Verzenio /Faslodex:
Generally I feel so tired and sleepy at odd times. Last Faslodex shot was more painful than usual and I experienced lower back pain for a few days afterwards similar to what I had when I first got diagnosed during pregnancy! I’m not sure 🤔 f the nurse hit a nerve or if that’s progression in the compression fracture in L3.
I’m actually worried more about progression since my TM jumped up again by about 8 points and those are the same 8 points that dropped since I started this treatment in May!
I’m not sure what to do! I am due for scans in a couple of weeks but if this too fails then this is like the fourth treatment in a row that doesn’t make it past the first set of scans!! I’m terrified and feel so hopeless .. I hope there was any way I can increase the chances of this medicine to work.. I need something to work!!! Please help if you know of something!!
As far as the diarrhea is concerned it’s definitely taking a toll on me though not any worse .. a few times each day. I know some of you take probiotics.. any particular brands you recommend??
I know I don’t post much but I hoped that at least posting a regular update on a new drug can help someone out there.
Waiting and praying ...
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Renew Life has a reasonable amount of bifidobacteria. Doesn't help me with diarrhea but may enhance verzenio's effect
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hi all....for what is worth...eating cheese sandwiches, taking 2 bio-gest pills before every meal— a product made by Thorne—and probiotics have been necessary, in my case, for proper digestion and assimilation, and to stop the out of control diarrhea caused by ibrance.
Until I discovered that little trick, I had been taking large amounts of Imodium for more than three months with whole mornings dedicated to running to the toilet.
Since I'm on a lowcarb diet, I have replaced the bread with a gluten free rice tortilla from TJ's that have only 20gm of carbs and it still works. I have since been having regular bowel movements and good assimilation, except when I forget to take the bio-gest, then out of control diarrhea and tummy aches follow within 30 minutes.
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Hi Luce and Chats,
I thought about you when I read this very interesting article about the role of the spleen in our immune system and how bicarbonate affects that relationship. I guess I will be drinking the bicarbonate when I’m not eating Enjoy!
The Baking Soda Cure For Almost Everything
Bill SardiJuly 19, 2018
Researchers at the Medical College of Georgia have discovered a nerve center in a cell layer in the spleen that controls the immune response and therefore inflammation throughout the body. Given that virtually all chronic age-related disease involves inflammation (called inflammaging), this discovery is of monumental significance and has widespread application for virtually every organ and tissue in the body as the spleen is not only an abdominal organ that is involved in the recycling of old blood cells but is also a key part of the human immune system.
The striking part of this discovery is that autoimmune reactions responsible for chronic inflammation throughout the body were quelled by consumption of two grams (~half a teaspoon) of baking soda in water for two weeks in healthy humans. Researchers say baking soda (sodium bicarbonate) calms the immune response in the spleen and has a system-wide effect.
An over-active immune response defines autoimmune disorders experienced in physically remote parts of the body including the eyes, kidneys, brain, joints, arteries and lungs as well as in obesity.
As researchers explain, when sodium bicarbonate is consumed it becomes a trigger for the stomach to make more acid to digest the next meal and for the overlooked mesothelial cell lining in the spleen to signal there is no need to mount an overly protective immune response that can alter a delicate balance between M1 and M2 macrophages, white blood cells that target bacteria, viruses, parasites and tumor cells.
Credit: Cumberlands University Biology
Mesothelial cells line the spleen and directly secrete the nerve chemical acetylcholine. When the spleen is removed from lab animals or just slightly disturbed, the mesothelial nervous connection in the spleen with other parts of the body was cut off and the healthy effect produced by baking soda was abolished. Acetylcholine signaling represents the brakes on the human immune response. Acetylcholine signals other organs to under-respond when confronted with pathogenic germs or tumor cells.
"This is the first demonstration that orally ingested sodium bicarbonate (baking soda) can promote a powerful anti-inflammatory response in both animals and humans," say researchers writing in the Journal of Immunology. Baking soda "may provide a cheap, relatively safe, effective and easily accessible and/or noninvasive method to activate anti-inflammatory nerve pathways," researchers emphasized.
Macrophages traverse the entire circulatory system. But macrophages that reside in the digestive tract represent the largest population of macrophages in the human body. This strategic location positions them as first-line defense against harmful bacteria and other pathogens.
Imagine the widespread universal application of this simple remedy in the human body. If only Big Pharma could have patented it.
The polarization of one type of macrophage (M1) over the other (M2) is considered the key link between inflammation and many diseases. For example, obesity greatly increases the numbers of M1 macrophages in fatty tissue. This can result in insulin resistance (inability of cells to utilize insulin to produce energy).
A giant pillar of modern medicine against age related disease is about to fall to baking soda therapy. Monoclonal antibody drugs that block the cellular target of inflammatory agents represent $90 billion in annual sales. Such drugs are commonly used to treat an advanced form of macular degeneration. M1/M2 macrophage balance is the tipping point between common and severe form of macular degeneration, a disease that robs older adults of their central vision.
The red wine molecule resveratrol also addresses macrophage M1/M2 polarization, which makes it another excellent natural remedy for chronic inflammation as well. This is why resveratrol supplementation has been demonstrated to rescue patients who don't respond to monoclonal antibody drug injections.
Where do we go from here? Are doctors going to drop their prescription pads and hand out samples of sodium bicarbonate? That's not likely. Let's see how modern medicine throws this sure-fire remedy under the rug this time.
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MM: thanks! I’ll read through this when I get a chance.
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I'm just cross-posting a new onc-live clip on Abemaciclib-Keytruda trial:
https://www.onclive.com/onclive-tv/dr-tolaney-on-a...
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I started verzinio 150mg with fulvesterant injections 7 weeks ago. SE weren't too bad to begin but now I am having diarrhea 8-10 times a day with cramping. Imodium helps the diarrhea but increases the cramping and gas to monumental status. Going by back to onc in a week and will ask for a dose reduction. Anyone have positive results after reducing the dosage?
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Hi Sunny,
I am curious about this too. I am only 3 weeks on Verzenio and I am still trying to figure out if there is a pattern to the diarrhea or not. I have it 3-6 times a day and sometimes it's a sudden surprise and explosive!!! I do take Imodium, but not on a regular schedule - I did not want to take too much and become constipated...my appetite is changing....and last week I had had a spinach salad. That did Not to go well!
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in some, the diarrhea settles down after 1-2 months. Some find certain foods trigger it; I didn’t. Probiotics are s must for your gut and to support therapy but may not stop diarrhea. You could try psyllium husks to absorb water and slow down transit. Take at least 2 hours away from medications to not interfere with absorption. Some people report success with a Chinese remedy whose main constituent is berberine. It is a natural broad-spectrum antibiotic so I would not take it for more than a few days. You may need to reduce your Verzenio dose if things don’t settle down after 1-2 months. That usually much improves the side effects of diarrhea and low appetite. No one can tell you for sure if a lower dose is as effective as a higher one but taking a lower dose is probably more effective than taking none
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How does one eat anything green - raw or cooked - on Verzenio?
One thing for sure - Tomorrow I’m going to Costco to get the huge box of Huggies wipes!!
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my diet is 60%+greens, mostly raw
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Thanks Luce and good luck to all on this drug
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Thank you Luce and Miaomix for your suggestions to ease the diarrhea!! I tried the probiotic and it helped me feel better not necessarily stop the diarrhea but there was general state of improvement:)
I was gone for a while because I was so anxious about the scans after the three months mark and was shuddering under the blankets in silence. As I feared it’s not looking good. So thought I’d update you.
I've been on Verzenio and faslodex for the past 3 months with a small but noticeable improvement to the bone mets .. the liver is a different story.. the four mets there almost doubled and one tripled in size since the last scan three months ago!
Since the combo I’m on is fairly tolerable and much more convenient than others, I thought of doing something local like the Y90 based on seeing good results on these boards .. my MO is not opposed to the idea this time and kind of pushed the ball in the IR's court for evaluation. Even though she laughed me off when I brought the same idea last time 3 months ago. We'll see.
It's important to keep a good quality of life and to squeeze the juice out of each treatment before moving on. I feel that I don't have many real treatment options left in my hat. Especially that I go through them fairly quickly .. in only two years I already tried 5 or 6. I even had microwave ablation to the liver on a single met before and that didn't work, more just kept popping up next to the ablation zone.
What do you all think?? Should I just move on with Halaven or something harsher or try the Y90?? Please share you experiences with the Y90 and any words of wisdom.. what to expect and what to ask IR if they refused??
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Nouzay, When I first brought up Y90 to my MO she dismissed the idea and she is still not entirely on board. I decided I wanted to look into this procedure and I went to to two research hospitals who had IR’s that had treated breast cancer mets in the liver. Although I am only a few months out from the treatment , the scans have been positive and at present there are no new ones. IR’s will want whatever type of scans you have had on the liver and the bilirubin values. It’s definitely worth looking into but choose carefully, the reader of the scans has to be familar with BC mets in the liver and it’s type of changes to the tumors. Your bone mets are stable and that’s important.
Hope you find a good answer.
Max_otto0 -
Questions about Verzenio dosage:
What dose did you start on?
If dose had to be reduced due to side effects, labs, etc, how long was it after starting initially starting Verzenio
Were there clinical trials for different doses?
Do “they" really know what dose is best?
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Chemokaze, I started at 150mg. Got diarrhea under control w/probiotic & Imodium. Last week #4, my ANC dropped to .80, so we held med for 3 days. Felt so good for 3 days. Restarted yesterday morning & already feel weak. Anyone else do Ca27-29? Mine # dropped close to normal on Halaven, then I got septic, had port removed & found I had new liver mets. After 2 weeks on this drug I have jumped to highest ever, over 1000. Dr says stay the course 1 more month, but I am also looking into Y 90. I am also fearful that this is beginning of end. Very frustrating. Sue.
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Thanks Sue...I’m wishing you all the best. My tumor markers were normal at diagnosis and still okay as of 5/2018. So, not sure I can ever rely on those findings.
Last night I discovered the physicians’ Verzenio website where it explains dosing. I learned the 200mg dose is for folks on Verzenio monotherapy only. Everybody taking AI or Faslodex starts at 150mg
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thanks Max otto for your reply! I’m really anxious about this whole thing! So how do I know that the IR specialist is familiar with BC .. that info is not readily available usually .. I get treated at Emory in GA and that’s a traching hospital.. sometimes I get frustrated with this set up but not sure if I took tge risk of finding a doctor elsewhere they’d be equally good.. ugh
Did you consider other local treatments before settling on the Y90?
Sue, I don’t think you need to worry too much about the TM .. I get the same narker as well and it fluctuates up an down .. I find mine reliable bit I take as a directional thing if the go up it’s bad news and if they go down usually things are good .. but don’t think 1000 is the end .. with my initial diagnosis I was 4000 plus!! That cme down at some point close to normal after ibrance then abraxane .. unfortunately mine is going up again these da
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interestingly, as I am almost done with week 4 of Verzenio, the diarrhea is slowing down...I take a probiotic a few times a week and Imodium only as needed. So, I am hoping this trend will continue. I had 2 of 3 CyberKnife treatments today
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Chemokaze, tell me about cyber knife, where is it being done?
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