Abemaciclib Verzenio for Stage IV
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@threetree yes! Same! I don't want to hurt my gut further with more antacid type meds but DH is pushing it haha. I do a tablespoon of manuka honey each day too. I will add black seed. Is that an oil? Will also add bananas back in to my smoothie!
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Hi Iacmelis11 - I get ground black seed powder on Amazon. It is my understanding that the oil is not deemed safe, whereas the powder is. It's easy to mistakenly get the whole seeds (which is OK if you want to grind them yourself), but I get the pre-ground kind. Yeah, the combination of honey and black seed is supposed to be good for heartburn/ulcer type problems. Interesting also, is that I saw somewhere on this board where someone successfully uses a product called "Banatrol" to help their digestive problems. I looked Banatrol up at one time, and it is a supplement that is mostly just powdered banana flakes and lactose (i.e. milk). That made me figure my probiotic Greek yogurt and bananas are essentially the same thing, and I would just as soon have the "real thing". I am not supplement averse, but just like with the prescription and over the counter stuff, I'd rather not if I don't have to. By the way, buckwheat honey is considered a runner up to Manuka honey, so sometimes I alternate/substitute the two, plus the buckwheat is a little less costly and using that too can help lower the overall cost. Buckwheat honey though, is not sweet and tastes much more like molasses than what we think of as honey, and many don't like that. Personally, I don't care either way. (Also, black seed has a whole bunch of other names like black cumin, black caraway, Kalonji, and many more. It is not actually related to caraway or cumin. Just make sure what you are actually buying by whatever name is officially botanically "nigella sativa" seed.)
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@iacmelis11 We do have similar timelines. I didn't do any treatment at all after my mastectomy in 2013. I ended up having double mastectomy, no chemo or radiation or hormone therapy although all were strongly encouraged. I decided that since my surgeon felt so positive about "getting it all" that I would pass on all of that. It turns out according to my current onc that it is a good thing for my body that I never used any of the above because now it is all new to my system and will likely act very positively in fighting the tumors. So far so good. Do you have bone mets only? So far that is all I have - in hip, sternum, ribs and skull. That's enough as far as I'm concerned. Sorry misread your MRI info - good luck Friday!
Threetree I am the same as you with over the counter stuff and supplements. I not only prefer to get what I need from my diet & home remedies, but supplements have never agreed with me. And I tried so many, even before my dx. I hope you get to keep your oncologist! It makes such a difference to go to someone who listens. I'm going to start "shopping" for a new one I think I had mentioned in previous posts. I just don't feel like it yet. I looked up all of the breast cancer oncologist at the center I go to and haven't made any move yet.
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Ladies, interesting discussion. My onc recommends I stay away from any supplements but I am not very good with natural remedies—still learning. I am 8 1/2 years into a Stage IV dx and you would think I would be anexpert by now… I love reading your posts. I do eat yoghurt and bananas, and try to eat healthy meals, but would love a good smoothie recipe. My DH loves kefir but it makes me gag. I react strongly to smells.
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8 1/2 years Intolight that is so encouraging for us all and I am hoping that you continue on! My favorite smoothies are:
- organic protein powder (currently using Whole Betty Berry Green Vanilla Strawberry)
- organic Coconut milk
- fresh or frozen strawberries, or banana, or blueberries or all of them (I try to use organic)
- ice
- peanut butter occasionally - if I want extra fat (I don't need) and more protein
Very satisfying!
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Thanks marcials. I will try it.
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@marcials1 Hi - Yes bone mets only. Cervical spine, hips, iliac and base of skull. @threetree Thank you for the info on the black seed I will look on amazon! I met with onc today and she does recommend Pepcid and called that in. She said verzenio cause all kinds of GI issues and to top it off, I had Rad to my cervical spine in Feb of 2023 so she reminded me that radiation is the "gift that keeps on giving" and I may have some throat soreness / constriction / acid etc etc from that complicating things a bit. Going to try more banana and black seed and Ph diet too. @intolight My daily smoothie:
1 scoop organic Vanilla Sunwarrior protein powder
1 scoop organic green vibrance powder
2 tbsp organic flax seeds
1 cup ish (I eyeball) frozen organic berries
(Will be adding banana!)
1 cup forager probiotic coconut / cashew drink - basically a dairy free kefir
water (I like it watery not thick)0 -
Intolight - I've never done any smoothies, but the two recipes given above look like good bets. I think I rely on my yogurt bowl with banana, flax seed, walnuts, and berries for much the same thing that people get with smoothies.
Marcials1 - I so agree with you about what an inspiration Intolight is with her over 8 years of doing this! I have been amazed and inspired ever since I learned this about her earlier in the year. Raising a glass to Intolight!
Iacmlis11 - You're very welcome re the black seed info. I'm not surprised that your doctor recommends Pepcid. Mine does and I think they pretty much all do. I do have some sitting here on my counter and I've used it a couple of times, but just not crazy about that sort of thing if I can at all do something else. Interesting about how the radiation might still be causing you some trouble. That's too bad and I hope it's not the radiation too, but "only" the Verzenio and any anti-estrogen that you might be taking.
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It's good to know heartburn is so "common." I asked my MO about Tums and she said it's fine, Verzenio isn't affected by stomach pH. I'm on day 9 of the 50 mg beginning dose and so far so good. The worst part of this whole debacle has been the biopsy sites where I'm obviously allergic to something they use! Itches like crazy.
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@orknitter my onc prescribed Triamcinocolone topical cream. Helps with itching.
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@laguna24 I also use Salonpas for topical itching. Works great for mosquito bites too!
I have had GERD stomach issues since the beginning of my dx 8 1/2 years ago. I know it is controversial, but I have been on Prilosec the whole time. Yes, it is only recommended for 2 weeks. My previous oncologist including my new one watches me closely. I have had no issues and it is all under control.
I had my first CT scan today since my Verzenio was reduced to 50mg four months ago. After my monthly Faslodex shots, we quickly drove to a different medical center than where I got my Faslodex shots because they said they could schedule me there for port access for the CT scan contrast. When I got into the scan room, the tech informed me there was no nurse on duty so he had to access my vein through an IV for the contrast. Arghh! It hurt like heck, but it worked the first time so I guess all is well. He was so kind and infused it manually rather than via machine so he could slow it down and monitor my pain (his suggestion.) The results were in after only two hours! Basically, there are no changes or concerns anywhere. (Nothing remarkable.) I am so happy even though I currently feel like crap. (My DH wants to know what crap feels like…)
Anyways, it is all good on the 50mg. Of course my oncologist has yet to respond to me as the results were posted so quickly, but this one was easy to read.
Blessings. Chris
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Intolight - Just so, so happy for you.
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@Intolight - Great news! Thanks for the update.
I go for my PET on Thursday (had to reschedule again - still coughing). Hope my results are as good as yours are 😉
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Intolight - so glad to hear your update!
Going2beatthis - hoping for the best results for your PET.
Threetree - hope all is well with you!
I'm getting accupuncture tomorrow. I know some people poo poo it, but when I originally had cancer it always relaxed me. And I could use some relaxing!
Enjoy your week ladies.
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Chris,
I am glad you are stable on 50 mg Abemaciclib. How’re your DiviTum results correlate with the CT? I don’t have any port installed so I am getting IV shots for CT scans. Just had mine done. Slow mets’ detraction. But since my almost anemia from drugs will discuss dose reduction or time off increase, like three weeks on Kisqali-two weeks off. Will ask for a blood test after my week off to estimate the recovery time.
as for GERD I had it at the time I was dx’d. On Famotidine twice a day. It has double-function: protects from GERD and blocks histamines in GI. I was on Omeprazole, but asked to switch to Famotidine and my onc supports me in this move.0 -
@going2beatthis Any word on your results yet? My portal shows results quickly but I know it varies in different locations. Praying for good results.
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Does anyone know if Verzenio causes depression or maybe the depression is a se of the extreme fatigue. I am really wrestling with not feeling like myself. My adult children are questioning the treatment because of the changes in my personality. QOL is not very good right now. I'm currently on 100 but I am going to ask for reduction at tomorrow's appointment. My MO says the efficacy is the same regardless of the dose. She said they start at the higher dose because of FDA restrictions.
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@grandmabubba I am sorry you are feeling this way. I don't know the answer to that. I know there are so many se's with Verzenio. I don't typically feel like myself but fight daily to be as "normal" as I can. Some days much better than others. Seems to come and go in waves. I think we are all different with our varied se's and intensity of them. Interesting what your MO said about efficacy. There are a number of us here who have had that discussion. @threetree and @intolight and @dulcea to name a few. And not all MO's start at the highest in fact many of us believe that is a mistake. I know dulcea you are not on Verzenio any longer but how are you doing?
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Grandmabubba - Like Marcials1 I also cannot directly answer your question, but I think it is a good one. In addition to Verzenio (originally 150, then to 100) I also am on fulvestrant, so if you are taking other things at the same time, it could also be part of the problem. I have not felt at all like myself since I started these drugs about 19 months ago now. I know I have had personality changes, and my friends can tell. I am definitely more "down", "dull", "unmotivated", "slow", " tired", etc. All of these drugs can do a lot of these things, and then combined, I think the effects can be stronger. The problem is that the alternative is not taking them and then just watching your cancer spread. It seems like at least some quality of life has to almost inevitably be sacrificed for life itself; at least until they come up with something better, and that doesn't seem to be anywhere on the horizon right now. I will say that taking daily walks does seem to help, both physically and mentally, but I have to "force" myself to take them, even though I love them. We just have to weigh our options and go with what works for us. Right now I've chosen to have a lower quality of life and hopefully live a bit longer. It's no fun for sure, and I'm very sorry that you are having to deal with this.
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@grandmabubba I think Verzenio does cause depression, at least it does for me, but like threetree and marcials said, the combination of drugs we take contributes to it also. I had my first scan last week after a dosage reduction to 50mg four months ago and my results are good. I am stable with no cancer activity anywhere. I was very nervous about it. Like threetree I have chosen to struggle instead of let go. I am sure my day is coming, but for now I want to watch my grandkids grow up.
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Thanks for asking @marcials1 . I progressed on Verzenio and then went on to Truqap because I have the PIK3CA mutation. That was a great drug! Some D as a side effect but felt pretty much like myself on it. Too bad I had progression on it! Tomorrow I start Xeloda which has it's own crazy side effects, namely hand foot syndrome. Not looking forward to that, but as usual, I have received a lot of great advice from smart ladies on here who have already ventured into Xeloda land. There is a lady who has been on it 7 years! Wow!
I spoke recently with my second opinion doctor about the starting dose. My local MO prescribed a huge dose. I thought she may have even transposed numbers! All the other Xeloda ladies started at less than half that dose and remain there or have only gone a little higher. My SO doctor emailed my local MO to decrease it a lot based on her experiences.
To further your conversation about doses, my SO doctor explained that when they do they clinical trials, they always find the highest tolerable dose, never the least effective dose. I guess they make their money that way, right? She said with her experience, she has noted that virtually no one stays on the highest dose and its still effective. She starts everyone lower than the recommended dose now and she referenced a paper on it but I didn't ask about it or get the information.
I wonder what the FDA restrictions are. I'm curious about that.
I hope everyone else is doing well.
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@grandmabubba I've noticed a definite change in my "mood." I'm on both Verzenio and letrozole. I think taking those two, plus just knowing I have cancer takes a toll on my mental health.
My latest blood work was good so the MO wants me to continue on 50 mg for another 4 weeks then she'll probably change to 100 mg. Just in time for the holidays!! Hopefully any SE will be managable. And I have a DEXA scan today, that will be interesting.
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Good to hear from you dulcea. Strange dose information from your MO. That's kinda scary. Always good to have a second opinion! Good question on what the FDA restrictions are on Verzenio. Will go check with Dr Google.
Intolight I am happy to hear that you are holding steady on 50 vs 100. I just did the opposite and so far so good I guess on the 100 for me. First 2 weeks were event free now I have the big D and some headaches. But no increased depression so that 's good. I've had a few what I call episodes that are I've been informed mini seizures - I've had on and off for almost 3 years. Nuerologists have no answers for me but I have mets I'm my skull. They refuse to say they are related. Whatever. The episodes increased with the increased Verzenio. Oh well on we go. As usual I need to shake it out of my oncologist and nuerologist. They don't tell me anything without a fight.
Threetree I agree on the daily walks. I sometimes don't want to go at all but then again what else do I have to do. And I always always feel better after my walk.
Orknitter I am on the same combo as you. I feel maybe a lesser version of my self. Sort of dumbed down and not so much energy or desire to do much. But like all the others say, I am preferring less QOL in order to stay around longer to be with my family. And it's not always terrible by any means. I think what I miss, which I heard another MBC patient say is that there are no more real "highs". or "lows" for that matter. It is just a keep going day to day and try to have the best day you can. Good luck on the 100 mg.
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@intolight - thank you for checking in on me. Sorry it took a few days to respond but was waiting to see my mo to go over the results before I replied. Anyways, has a great appointment with my new mo. PET/CT was good. Only area noted was the right frontal bone met (treated withda SBRT in July). It was reported to be "visually improved" and the uptake "is now about 5, prevviously about 8". 👏
Had labs drawn after the mo visit. Got my CBC and CMP results already. Almost all were within the normal range (the range at this in-house lab are a lot different than at my previous mo's). Still waiting on the results of the makers. In addition to the CEA and CA15.3 which I have had done routinely since diagnoised, she is also doing a CA 27.29.
Based on the lab results and the MRI and PET/CT scan reports my new mo is having me continue on my same treatment (Verzenio and Letrozole) for now. My next appointment will be in 3 months, after I see my ro but before my next PET/CT scan.
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Hi all, just a general question, and maybe it's been answered before: I went on 100mg Verzenio from 50mg about a month ago. The first 2 weeks were uneventful and I felt fine. As fine as can be expected anyway. Now I have on and off D, constant headaches, nausea, fatigue and no energy. Does it get better?
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@marcials1 I was on 100mg for two years and reduced to 50mg because of the side effects you mentioned. While on 100mg I was able to control the nausea with occasional zofran and took tylenol daily for the headaches. I controlled the D with Imodium but had to keep on top of it. What made me reduce was the fatigue and energy issues. Sorry to be a bummer… I manage better on 50 mg with only occasional D, but it still happens, but it is better. My fatigue and energy are only mildly improved but since my first scans on 50mg were good I am staying here. I am slowly able to do more. I think it is the 8 1/2 years of oral chemo that weigh me down the most. I am tired of it all. My biggest complaint right now is extremely dry eyes and blurred vision which is part of living here at high altitude in a very dry climate. (Yes it is mountains and we get snow, but it is known for being low humidity.) This makes me feel sleepy all the time. I am also on oxygen 24/7 which doesn't help and adds to the fatigue.
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Marcials1 - I've never done 50, but I did go from 150 to 100 and things improved, but the symptoms didn't go away. What you describe is pretty much what I live with every day. I don't have too much of a D problem, but the headaches, stomach aches, fatigue I just live with and find a little "here and there" to manage it. I try not to do the antacids, imodium, or tylenol if I can avoid it, but sometimes I do "break down" and take one of the above. I try to do things best with diet and walks, but sometimes that's not enough. It's seems to be "just the way it is" for me anymore, as the alternatives are moving on through the drug arsenal and or letting the cancer spread, so I take the lowered quality of life over the other options. I can manage and I do get by. I'm just real sorry that going from 50 to 100 has done this to you.
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Thanks threetree and intolight. I had a feeling that would be what you would say.
I may try the zofran for nausea. I think I have some. And I take ibuprofen almost every day. I just cannot take the headaches. I know it is awful for me but with all of the other crap I put in my body I just think "so what". I may switch to Tylenol though. I'm so glad your first scan were good intolight. Hoping that you keep feeling better and better on 50 and that your scans and tests are stable. Bummer on the high altitude side effects. Can't seem to catch a break can we?
The D isn't too terrible and is manageable. I haven't taken any immodium or other anti-D. It is the headaches that get to me the most. They are dull most of the time and constant. Then they subside and sometimes come back with a vengeance. I agree with you threetree that this is just the way it is and is going to be. Quality of life sacrificed to be able to live longer. And it is tolerable - barely.
My other issue is my mini seizures. When I upped the Verzenio they increased. They had been under control with seizure meds on the 50mg but the 100mg has brought them back and they are scary. So I may end up back on the 50. But I want to fight the cancer as much as the seizures. It's frustrating.
Thank you both for getting back to me. Hope that your Thanksgiving is enjoyable for you if you celebrate.
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hi and welcome to the club nobody wants to be in @orknitter. My Onc started me on150 mg Verzenio immediately when met’s appeared in my bones …..everywhere…spine thoracic, Lumbar sacral, hips, ribs, sternum, and tailbone. That dosage caused the big D every day, nausea, exhaustion, dizziness,. Heartburn, and recently, pain in my esophagus, sore throat and coughing. When I first started taking the pill I refused to look up the side effects, but when all of this started I. Realized all my misery was caused by the. Verzenio. I also am on 3 injections monthly. 2 injections.Of Fasoldex. A hormone antagonizer, and Xgeva one Injection , a Monoclonal antibody cocktail…..they too make me feel so lousy with bone pain,weakness, headaches, hair thinning, and depression. But my onc’s PA suggested Collagen for my hair, and now i’ts really growing thicker and longer again.. I take a scoop in my coffee every morning. It dissolves perfectly and no taste whatsoever..Oh and. @threetree , I do have the black seed oil and honey. I’ll. Try a table spoon each day for the digestive issues. I’m already taking a tablespoon of Moroccan Olive oil, which has a lot of antioxidants. It’s light and tasty too!!😋
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Oh and everyone, Last night I. Got no sleep, coughing al night, I woke up this morning sooo sick and weak..and nauseous with. Terrible esophageal pain. I think I have a terrible Fall. virus.🤢
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