Abemaciclib Verzenio for Stage IV
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Luce, I had to laugh at the formed stool! Sorry everyone but that makes me super happy too. So the diarrea was only that short time on Monday this week. I have to work 9 to 1 tomorrow and after that shift I will have completed my first full week back at work. I'm very grateful and also very tired but my onc says it will get better. I am on week 6 of verzenio and expect to do well on it. (even though I freaked about taking it and thanks Z for helping me with that)
So, I called my onc Thursday and spoke to his nurse because I have been having constant trembling of my hands and that is not normal for me. I asked her if I should be concerned and she said "yes, be concerned can you come in now?" I ran out of work, got to the office, saw Dr. Li and he said it is my stress level. I told him that I'm not more stressed, in fact less but he blew me off. I asked him if it could be withdrawal of sugar because I cut back by 90%. I did that because I was eating whole boxes of cookies, peanut butter and lots of honey, caramel etc in the middle of the night several times a night. Anyway, he then said that sugar doesn't cause cancer to spread more quickly and that all food we eat converts to simple sugar, blah blah blah blah.
He totally missed my point and he said my problem is my anxiety. I know my anxiety much better than he does and the shaking is not because of that! I ran out of work in a panic because the stupid nurse (sorry) said to come in. It wasn't my idea. Oh well.
It is good to read all of your posts. Luce I am so happy you are doing better on the lower dose.
love to you all.....jenny
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Jenny -
Your doctor's comments on sugar are nonsense. Obviously he's never cut back on sugar. Yes everything is broken down to simple sugars but simple sugars jack up your insulin in a way that is entirely different than, say oat bran. Beware the white coat. He knows cancer (I hope) but not nutrition. Good job cutting back on sugar. It will make you healthier overall and certainly make a difference. The layers of nonsense in his comments astonish me. If you want support for your choices from a doctor who knows what he is doing, try reading Anti-Cancer A New Way of Life.
I am sorry you are shaky. If you don't think it is anxiety, I would look at diet and anything that your instinct tells you might be the cause. But low blood sugar is a reasonable theory.
>Z<
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Jenny, wow, I am surprised by your MOs response on everything breaking down into simple sugar. That is surely an overly simplistic view that does not tell a faction of the sugar story. You are inspiring cutting back on sugar so much. It is hard. Sugar is a feel good, addictive "drug". You are a trooper. Trembling could definitely be low blood sugar - from consuming less sugar or the starts of simply being hungry for your next meal or snack (and not having sugar reserves temporarily stored up in your cells from a previous sugar intake to turn to when hunger kicks in). You know your body better than anyone. He is the expert on cancer. You are the expert on you.
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spicedlife. Who is your MO here in Dallas? I've been dealing with BC and MBC here in the Dallas area for 25 years. Through those years, I have fired a few. Ha
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Grannax he is Dr. Li and his office is called Dallas Cancer specialists. I believe he is a good oncologist but he is a bit casual on concerns other than cancer. What I like about him is that he is not affiliated with anyone. I felt like I was cattle being herded at Texas Oncology. What I did like about them is the facility is nice. I chose them over Dr. Li in 2012 during chemo. I went back to him as soon as the chemo was done. I know that was very superficial but I really had no idea of the reality of cancer.
Z and JFL, thanks for "getting it!" I was eating so much sugar that I had horrible night sweats and had sugar hangovers. I have some changes to make still but I already feel better knowing when I wake up in the night (which is at least 4 times) I won't eat boxes of cookies and caramel out of the containers. I am dealing with the anxiety and fear and other negative stuff with my wonderful counselor. In the future, unless the onc says go to the emergency room, I won't be sharing anything other than cancer with him. I am also going to tell him I want whatever scans need to be done on a quarterly or whatever basis. . It is an "interesting" company to work for but the insurance is a God send. I'm also going to get copies of my blood work.
Okay, I have some good action plans to implement! Again, thanks for listening without judgement to me. I never talk this much. My husband and I are more friends and roommates ( TMI) and he never has been able to comminicate with me about anything. I've given up on that and am actually happy to have this living arrangement. We have basset hounds in common. I met Doc Holiday bad ass basset hound on our first date and fell in love with the dog. They are great therapy. Very soft to pet and they are very calm and laid back. I have the Lovely Lucy Lu and Conner now and we lost Charley Bucket about six months age. He was my heart dog. The dogs sleep with him because I'm a light sleeper and they feel like a heating blanket curled up next to you. I have my own room.
Love and prayers for this tough journey. Jenny
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Jenny - insulin peaks drive cancer. this is well understood and documented. there are people who do ketogenic diets to starve the cancer of sugar but that's a tough road for most people. i did an extremely low carb diet once a while ago and i had a very hard time with it. but moderating the insulin peaks by sticking with complex carbs is going to make a huge difference on many fronts. you've got this ...
>Z<
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spicedlife. My MO is not affiliated w Tx Oncology either. Dr Tharian is on her own, too. I really respect that in a state where Texas Oncology has the monopoly. My husband and I both fired a couple of them during our treatment for cancer.
None of us is perfect, not even oncologists. So, we weigh the most important things and choose. I'm sure your choice was best for you.
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Hi all:
Just wanted to check in — and I need to read through a few pages of this thread and get caught up. Just wanted to let y'all know that I'm starting my 13th cycle of Abemaciclib + Faslodex + trial Pi3k inhibitor. Scans from Feb. 7 show stable disease. Tumor markers dropped just a bit — from 67.7 in January to 66.3. (But, overall, down from 827.9 one year ago.) I'm having some issues with glucose levels. Once again, they had to track me down in the infusion center and give me some juice boxes. I was down to 50mg, which was a new low. This was a blood draw around 9:15 a.m. I'd eaten a normal breakfast at around 7:30 a.m. (healthy cereal w/ almond milk and OJ + carrot juice). No one can figure out what's going on.
I got a referral for a nutritionist, to hopefully help figure out what's going on with blood sugar levels and sort out what I can and can't eat. I'm now finding that re-heated foods are causing stomach issues in addition to raw vegetables. But I'm still, overall, feeling good.
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Thanks for the update Mazie73. 13 cycles and stable sounds great to me! Congrats. Now if only they can figure out what is going on with those pesky glucose levels. Cheering you on!
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Wonderful scans Maizie!! I forget which trial you are on? phase 2? is the PI3K inhibitor Taselisib? Is the low blood sugar from Abemaciclib or the PI3K inhibitor? This is where is it helpful to be in a trial, because they will take the time to try to figure out the problem so you can continue in the trial, since you are bringing up their numbers!
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Mazie - I am thrilled to hear about your continued response on the trial. Thank you so much for checking in. We don't have a lot of people who have been on this drug a long time.
I am also happy to see you proactively dealing with the low blood sugar. It's easy to get burnt out dealing with just the cancer alone and then not deal with these other critical issues.
>Z<
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a few days after going on the reduced dose, the diarrhea ceased for a week. today, it's back, announced by the characteristic intestinal cramps. i had just been wondering whether it might be time to try the full-dose protocol again. clearly, no. i am very much hoping that this will remain an isolated, or at least rare, incident, or perhaps linkable to a certain food.
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luce - here's hopin its food. i have a chronic loose stool which i now know (thanks to you) is not, technically, diarrhea because i only have one movement per day. however, i had these chicken enchiladas on friday and man did that meal come through fast and furious.
thinking of you.
>Z<
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zarovka: thanks! to clarify. i am not suspecting food poisoning. i have an iron-clad stomach, eat sensibly, haven't eaten out or consumed anything funky...this feels like abemaciclib side effects. i am merely hoping that there might be a certain food that maybe abemaciclib does not get along with. i have so far not discovered any patters like that, though.
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I understand. I don't think the chicken enchilada was bad, I just think my system is a little disturbed and not ready for a half a cup of hot red chili. In my case it was kinda obvious, but I agree strongly that certain foods trigger these reactions.
>Z<
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Mazie, do you know the name of the PIK inhibitor in your trial? Please keep us posted on how it is going. Those types of combos hold a lot of promise. 50 is very low, especially given you drank fruit juice for breakfast. Do you take apple cider vinegar by chance? My blood sugar was randomly low a month or so ago at my chemo appointment for no reason and I believe it is from the apple cider vinegar drink I had that morning (even though I ate lunch after having the drink). I agree with Curious question - could it be linked to the study meds?
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Getting caught up on recent posts. Luce: I was so happy to read that you were doing better on 150mg (that's what I'm taking). But, that lasted only a week? I only have occasional problems with diarrhea — maybe once or twice a week. If we're going out to dinner or to a friend's house, I'll take a pre-emptive Lomotil or prescription Imodium. I'm still staying away from raw vegetables. My husband and I went out for sushi the other night and I was picking all the cucumber out of some of the rolls.
JFL and Cure-ious: The Pik3 inhibitor is LY3023414. It doesn't have a name. It's a Phase 1b trial, so every time I ask about side effects, I'm told that that's the point of the trial — to figure out all the side effects. Initially, I was having problems with low phosphorus levels, so they lowered my dosage and put me on phosphorus pills. Now that that's cleared up, it's the glucose. I've been meaning to call my oncologist. I didn't get the alert about the low glucose until after I left her office. While I'm supposed to get blood drawn one hour before my appointment — so she and I can go over the results — I'm perpetually running late, so the results come in when I'm at the infusion center.
I still need to make the nutritionist appointment. *And* an ENT appointment, since a new side effect seems to be a chronic mild sinus infection and acid reflux that feels like a rock in my throat.
Despite all this, I'm thrilled with the results and will gladly continue picking cucumber out of sushi rolls!
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Luce - Thinking of you. How are things going?
And everyone else on abemaciclib ... keep the updates coming. Many people interested.
>Z<
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thanks for asking! i am not sure how much help i can be with my updates, since i am not monitoring my tumors. i don't want imaging, and i don't want to know what my markers are, so i don't check my bloodwork when i get the results. i am so symptomatic that i'll be able to tell if something is working. so far, no improvements. my breathing remains very poor, mostly due to tumor growth in my parenchyma.
as for side effects, on the reduced dose of 150mg i have had one day of grade-4 diarrhea last week, several days of grade 1, and several days of no bowel movements. i have been taking abemaciclib for 5 or 6 weeks now, the last two on the reduced dose. i don't think i'll try to go up to 200 mg again.
i have always been slender but now am ridiculously skinny and weak. the cancer, probably. but diarrhea hasn't helped.
currently struggling with what may be the side effects of discontinuing propranolol, a beta blocker. huge headache. but i don't mind as long as it goes away again soonish.
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Luce - good to hear from you. hugs and support. you are one tough cookie.
>Z<
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zarovka: thanks. i hope you are doing well. keep us posted on your treatment also.
this is somewhat ironic, but i have to be tougher than i want to be because i am on abemaciclib: i have been long eligible for hospice but can't go on it while i am taking abemaciclib. so i have no care or help at home and cannot get hospice-related services, like volunteers that help with housework. and when i feel really terrible, i'd have to go to the ER. if i were on hospice, i'd get doctors and nurses providing house-calls. i cannot tell you how hard that sucks. i basically have to tough out everything by myself because i am choosing to remain on abemacicilb for now.
(palliative care is no help in my situation. i have explored that.)
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luce - wow. perhaps there are non-profit support services, but i understand that can be more trouble than benefit.
>Z<
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zarovka: there are but they are linked to hospice. you have to be enrolled in hospice to qualify.
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I have just completed my 6th week on abemaciclib. I am feeling better than I did a few weeks ago, but it is still a struggle. The diarrhea is still present along with the uncomfortable and constant stomach woes that go along with it. Lately I have been having more nausea. I am taking meds for all the side effects and I do have some good days, then get knocked back again. I have also added a daily probiotic, Floristor, which seems to have helped. I just don't know how I will feel on any given day, so it's hard to plan anything, other than dragging myself to work.
I was hoping to feel a lot better by now, and had planned a trip to Spain at the end of March, but I don't have confidence that this will resolve any time soon, so I guess that's not happening. Damn.
Hang in there Luce and Z and everyone! I also would love updates on how everyone is doing.
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Geez. It's hard to believe that someone decided that only people on hospice need support.
Donnabelle - I am sorry you have to change your plans but I think it is also important to reduce stress. With the random symptoms, it seems the way to go. I am not on abemaciclib yet but I also don't know how I am going to feel from one day to the next. I understand having to take on day at a time. Thank you for the update. Looking forward to more. Sending strength and peace your way.
>Z<
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Good news! Had blood work done today and the doc called tonight to say my tumor markers went from 468 to 279 in one month. She was excited about it and says that I am responding really well to the abemaciclib. That makes the rough ride with this med worth it. PET scan in 5 weeks and hopefully it will be good news
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Donnabelle: Congratulations! I am so happy for you. Looks like you are not only a responder, but a rapid responder, too. I guess the Faslodex is helping with that. I hope abemaciclib will keep working for you for a long time, at least until something else is found.
Curious: is anyone on here using abemaciclib as monotherapy, like I am?
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Go Donnabelle. Go girl. Keep checking in.
Everyone - we want the good news AND the bad here on the Abemaciclib channel.
>Z<
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Luce,
I don’t know if you’d feel comfortable with this suggestion or not, but local churches often provide the kind of support you need. If you called and asked if there was a support service for cancer patients, you may find there are lots of people who would be happy to help you. I wish I lived nearby, because I’d be there in a heartbeat.
Hang in there. I love this quote: “There is something you must always remember. You are braver than you believe, and stronger than you seem, and smarter than you think.” Christopher Robin to Winnie-the-Poo
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Donnabelle,
I echo the others with congrats for your good news. I love to hear about even the smallest victory against this disease. Keep ‘um coming
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