Abemaciclib Verzenio for Stage IV
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We can be hopeful that there are new trials being done right now for what may be after Verzenio. I don't keep up on what is going on behind the scenes but I probably should. Btw, does DW get Zometa infusions? Reach out to us any time and we'll be as helpful as we can be. I hope you and your wife have a happy holiday season!
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Thank you for your words @marcials1 Happy Holidays to you too ♥️
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Do any of you get bad stomach pain with Verzenio? I've always had some, but it seems like it's increased over the last month or two. Earlier this week, I skipped a couple of my Verzenio daytime doses (I absolutely hate to do it, but sometimes feel I have no choice) and within a couple of days, I was feeling much, much better; especially stomach wise. I started taking both daily doses again, and now sure enough, all that stomach pain has come back, along with an overall increase in a "yuck" feeling, tiredness, and lousy mood, etc. I'd really hate to have to stop the drug or go down to 50mg twice a day, because to my knowledge that level has not been proven to be as effective as the 150 and 100 mg doses twice a day are. I'm at 100 now and have been for a little over a year, and it's been much better than the 150 was. I'm wondering if it's cumulative, because I'm starting to feel as bad on the 100 mg dose as I did on the 150. Just wondering about others' experiences in this regard. Thanks.
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@threetree Yes, I had stomach pain also and am doing much better on the 50 mg. I know there is a risk it may not work as well, but I felt like I had to improve my QOL and just do it. My latest scan showed I was still stable although my onc wants another MRI because two areas weren't clear. They have been watching those areas for over a year so I am not panicked. It seems they order a CT scan, then have to have an MRI to clear it up. This is the third time for me on this. I am fatigued and have little stamina but I feel like I would be like this on any drug. So sorry you are going through this…
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Oh Intolight - Thank you so much for your comments and sorry too that you are having an up and down time with all of this and feeling so tired. I actually have a little bit of a new theory since my earlier post this morning. I'd been relatively fine on the 100 mg dose, and then a couple of months ago, after doing some reading, I decided to add some honey and ground black seed to my daily regimen of "stuff", because they both have some helpful properties re a lot of things. I now look back and can see where some of what has seemed like an increase in Verzenio side effects coincides with adding the honey and ground black seed. Also, the effects have been gradually increasing over time, and seemed to have gotten a lot worse this past week. I did feel a lot better skipping those 2 Verzenio doses a couple of days ago, which would have given me about the equivalent of your 50 mg for two days there. As soon as I took the 100 twice a day again, it all started back up.
Well, I googled about honey and black seed and black seed can apparently make some drug side effects worse, as it affects a liver enzyme that breaks down Verzenio and other drugs. My understanding is that it would break down the Verzenio more slowly, so the side effects would build up and/or be stronger. I'm wondering if something like that isn't going on. I also read that honey can interact with a lot of drugs, so I'm wondering about that too, although from what I read it looks like it might even have the opposite effect on Verzenio, i.e. it would speed up the metaboliziation of Verzenio so much that it could lose a lot of it's effectiveness - kind of the opposite thing. It's all about pharmaceutical stuff that I don't really understand at all, but the basic gist of what I read says that anything (food, supplements, other drugs, etc.) that effects a certain liver enzyme (CYP3A4) can affect Verzenio. The one we are always told about is grapefruit, but apparently there are many more. Just my latest whim, so I'm not putting a lot of credence in it, but I do think something else is effecting the way the Verzenio behaves in my body.
I'm afraid to bring it up with the oncologist at this point, because it would likely spur him to think I'm a flake (re my honey and black seed theory), or cause him to want to do more scans and maybe change the drug. I'm going to drop the honey and black seed for the foreseeable future and skip the morning dose of Verzenio again today and then see how I feel in a couple of days.
I just feel so badly for you having to keep getting these MRI's after scans. It is so frustrating and takes up a lot of time, along with producing a lot of anxiety. I know what you mean about how feeling tired on any drug would be par for the course, but there are different levels of tiredness. I'm also glad that as you say, you are not panicking, because this has been an ongoing "watch and wait" thing for you. I would agree that it's probably not anything immediately alarming. I do hope you get an answer soon though, so you can stop all the craziness with the repeat scans.
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@threetree Just to add to your discussion… My onc told me not to take any supplements, so I shy away from anything except probiotics , vita D, and Magnesium. I also read where Clementines (Cuties) have the same enzyme as grapefruit, but it was unclear. I messaged my PCP the other day about it but he has yet to comment. I will save it for my oncologist' office the next time I go. They are so sweet this time of year and I love them. Anyone else heard of this? Thanks….
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Intolight, thanks. I too try to stay away from most supplements, but I do take a couple. I figured the honey and blackseed to be "food" rather than supplements, but I think sometimes there is a fine line there. I've heard about some oranges being bad also. I heard it was Seville oranges and anything that is a Mandarin. I think those Cuties might be some sort of Mandarin, but I've never been able to find anything that notes just which oranges are in the broader Mandarin group. Around here this time of year we have the Clementines of course, but we also have those wonderful Satsumas, and like the Cuties, they are delicious, but I can't find out if they are Mandarins or not. I just love them, but have been avoiding them (and most all oranges) these last few years over the possibility of some sort of interaction with cancer drugs. I really miss them, and understand that they have good things in them for cancer fighting too. I wish there was more information out there about these possible food interactions with the drugs.
I've been told before that some of my stomach pain issues could be heartburn, but I have found that most of the heartburn treatments like Tums, Pepcid, etc. don't really help this pain I get and can actually make me feel worse more often than not. I don't like to add any more drugs than necessary. The honey and black seed mixture is supposed to be good for heartburn and ulcer type issues, so I thought it might be an alternative to all the drug type antacids, but I don't know. Apparently there is something in black seed that is supposed to fight cancer too. I don't expect any sort of miracle cures from any of this stuff, but I do think of it often as "just one more thing" that can help fight the cancer like green tea, mushrooms, (and oranges?) etc. Maybe the honey and black seed does more harm when you take the drugs too. I just don't know, but will play around with this a bit and see. I did take a couple of tums a few minutes ago, in case this is a heartburn thing, but so far I haven't noticed any improvement - typical. I still wonder too sometimes about the fulvestrant, as the low estrogen can cause similar symptoms with stomach, headache, and fatigue problems. I also really noticed this increase in side effects following the last round of shots, so there's that possibility too. It's just so hard to know what's what with this stuff and it makes it all the more difficult to deal with.
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@threetree ,I do take supplements….probiotics ,daily one a day Centrum for women, D3, black seed oil honey, and I’ve just started drinking Tumeric with honey freshe grated ginger and green tea every day. I’ve noticed since. Drinking this tea, my h joints see better and I’ve noticed since been bothered with bone pain since my monthly injection last week. Just really tired and weak. Clementines are always delicious this time of year, my DHeats them all the time. Me not so much. i do love the big naval oranges and infuse them in my water. I just wanted to ad I always have been bothered with heartburn and the. Only thing that keeps it from flaring up is taking a Prilosec once a day and i always keep a bottle of Tums in the house. I don’t want to take them too often because my calcium level was up a couple of times. We’ll going to bed now. Good night all.🩵🥱😴
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Hi Shanagirl - Interesting, that just as with our cancer drugs (and side effects), we also do some similar things with the supplements, etc. I take a D3, but I'm taking a break from my ground black seed and honey, because I think it might have been ramping up the Verzenio side effects. I've also been taking SAM-E for over 20 years, for mood and joint problems. I also use a happy light for mood issues too. I'd rather do that sort of thing than take commercial anti-depressants. Frequent walks help too. I drink a few cups of green and ginger tea every day and once in awhile do a "ginger-turmeric" tea. I've actually been thinking of adding the turmeric more often. Oh yes, all those oranges this time of year are so yummy. I just wish they'd figure it out if they are OK to go with these cancer drugs or not, because I hardly ever eat them anymore, due to that issue, and now that the stores are loading up on oranges, I just want to dive in. I used to put the leftover peel in my green and ginger teas, but quit doing that too, because of the not knowing. I think I read that one of the best cancer fighting components in oranges is in the peel, but unfortunately it seems that that same component (enzyme, flavonoid, polyphenol or whatever) is what interacts with the cancer drugs, so just don't know … I'm afraid to do anything like Priolsec, because I understand it's not good for bones. I do do Tums now and then, and an occasional Tylenol, if I'm feeling really bad. My calcium has been low sometimes (due to Zometa I think), so I try to be careful about that and eat food that has a lot of calcium. I do some calcium supplements, but have yet to find one that doesn't give me some kind of stomach trouble, etc. Something in all of this though, has seems to increase my Verzenio side effects over the last couple of months, and I just wish I could figure out what it is, unless of course this is actually a Faslodex problem - who knows?! Hope you had a good night and rest😊.
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@threetree - I take Nature's Way Calcium Citrate Carbonate & Malate (500 mg per serving). Don't know if you have tried this one or not. It does not give me any stomach trouble and I have been taking it for years. Hopefully, if you haven't tried it before, it won't for you either. Good luck.
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@threetree I do get bad stomach pain on Verzenio. At least that is what I have been assuming is causing it. I don't know if there is anything in particular that triggers it though. I am dealing with a bout of it right now which reminded me I wanted to get back to you! The lousy mood comes and goes for me also. I have skipped a few doses here and there but not very often. Usually it's when I have a really bad headache and cannot stand the thought of putting any drugs into my body. This current wrenching stomach pain came out of nowhere today. Not eating anything different. So not sure. I'm hoping not to go back down to the 50 either because I want to get some results out of this 100 dose. I guess I'll just deal with all that comes with this and hope it passes sooner than later. Always something.
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@threetree I just saw your updated post. I don't do any supplements at all. I cannot. Every single one of them bothers me in one way or another. I was just thinking of adding a probiotic though because my latest issue is lots of different rashes. Itchy and annoying. My primary care thinks it is gut related and said to try a probiotic. Interesting what you found about the black seed. I have stayed away from that (like all supplements) but I have been using honey a lot over the last few years. I am going to back off of that a little now also. It's sad that you feel you cannot tell your oncologist for fear of him thinking you're "a flake". I find that if I share too much I get reactions like that also. They ask a million questions but don't really want us to answer like it cases them more work. We should be able to be 100% honest because we never know when that one thing could be a trigger for a needed scan, etc. But like you said, sometimes we get run around and run through the mill with all the additional scans, MRI's, etc. Sometimes we just need to trust our own bodies. @intolight sorry you are dealing with so much of that right now as well with all of the additional scans and MRI's. But I'm with you, it would be that way no matter what drug I am on. It just isn't easy for any of us but just a little easier would be such a relief. Sorry if I am rambling on and on, I can do that sometimes…..
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@intolight @threetree I had not heard of other citrus having the same effect as grapefruit. But I do eat a few oranges a week so…..now that has me thinking.
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@shanagirl Are you feeling a little better these days? I do take turmeric, you reminded me of that. I don't consider it a supplement though. I mix it with water and lemon juice and a little black pepper. I only do it a few times a week in the morning .Sometimes I add the ginger too. And I drink lots of watered down green tea. I have quite a bit of that and hope it doesn't have any negatives because it helps get all the water in me!
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@marcials1 I am feeling a little better these days. I think the tumeric. With ginger and green tea is a great thing to take. It’s like a tonic for me. I’ve noticed I’m not so painful in. My bones and joints since taking it.. it’s supposed to have anti-inflammatory benefits in your body’s cells. And. Your joints., and good for metabolism.. I’m still very tired anyway. I get in a. Low mood the week or 2 following my Fasoldex and Xgeva injections.. I usual start feeling a little more energetic in the third week after the shots.
@threetree I didn’t know oranges, like grapefruit interferes with medications. never read that.🧐🩵
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GoingtoBeatThis - Thanks so much, and you know I actually have tried the Nature's Way and have a bottle of just what you've described sitting on my kitchen counter. It is one that gave me less trouble and I've planned to try it again. I've taken some and had no problem, and then I'll take it another time and get some bad digestive issues. It's another one of those things of trying to figure out just what is causing what, but I do think that one is a better one. The other one I've had some luck with is Pure Encapsulations calcium citrate. It comes in small dose capsules so I can spread them out over the day, and there isn't anything extra like fillers in it. I've kind of got it down to those two brands for now.
Marcials1- Yes, Verzenio definitely causes some bad stomach pain, but so do other things. This is my second day without the ground black seed and honey, and I think I am getting a little better. My head is definitely more clear today, and the stomach is improved, but still a problem. I took my full Verzenio dose too, so even with that, I'm improving a bit; makes me think Verzenio might not be the culprit in this case. I skip mine too very rarely, but when I get such bad stomach trouble I can't bear the thought of putting any more drugs in my system.
Re the supplements, I've always thought of black seed as a spice, not really a supplement, but as before I think there is fine line sometimes, as with turmeric too. Overall I think it's good to stay away from supplements just like the pharmaceuticals. Everything you put in your body can have its' good and bad, but there's so much unknown about all that stuff and I think the more "natural" we can leave our bodies and systems, the better in most cases. Obviously we need the stuff like Verzenio. My oncologist is actually wonderful (so much better than my previous), and he is the one who would probably be the least likely to think I was a flake, but I still get worried, and I do know he might want to do more scans, etc., depending on what I tell him, so I try to weigh things carefully before I bring them up.
I'm not sure about the citrus, but I have read over the years that oranges that fall under the broad Mandarin category can cause problems with the drugs. On their own, they are supposed to have some good cancer fighting qualities - it's not all oranges, but I can't get straight just which ones interfere with the drugs.
Shanagirl - It's apparently only certain kinds of oranges from what I understand. You also brought up how your low mood improves the third week after your shots. I'm wondering if that hasn't also been a part of my problems lately. I am due for shots in a week (day after Christmas - yuck!), and I'm thinking that today, I might have started my "better week" that I have before the shots. I'm finding that the side effects from the Fulvestrant are lasting longer, and I understand that it is a cumulative thing, so there is that. I just can't figure out what has been causing all my recent problems, but Verzenio, Fulvestrant, and yes black seed too, can cause all kinds of stomach upset.
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