Abemaciclib Verzenio for Stage IV
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Thanks SadieS for your response very helpful.
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JFL, is this the one?
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Yeahhhhh that’s the one!
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Thanks Frisky, I think I will get their iron too.
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It's fascinating how different each of our bodies responds to treatments and supplements. After the blood transfusion Monday, I got bloodwork on Friday. That was 16 days after discontinuing Verzenio. Across the board, all bloodwork improved. The rbc count went up 2.0 points of course, due to the transfusion. Other markers improved or even stabilized.
This leaves me with mixed feelings about the CDK s. While hyped as a big breakthrough in treating mbc, for some they can wreak havoc on quality of life and mess with your mind when you see your bloodwork getting all cattywampus and begin worrying your body is breaking down in other areas.
I am glad for the women who tolerate and benefit from the CDKs. The meds aren't as good a fit for me.
Honestly, my take from this past week of hospitalization and testing is that I'm actually pretty healthy except for the fucking bone mets. Leaves me shaking my head.
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Does anyone experience watering eyes. Mine did on Xeloda, but it's worse on V, especially my right eye. Unless it's allergies, that's the only other thing I can think of.
Devine, so so true. I have a drop in blood, and it looks like minor issues now with liver and kidney. I see my onc on the 12th.
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I hear you Divine (and had a good laugh when I read your last line). It's so frustrating when things start going sideways despite our best intentions and efforts. I'm actually a pretty tough cookie when it comes to managing side effects for the most part. I was on heavy duty chemo when I was originally diagnosed in 2001 and worked throughout. The only days off I took were when I ended up in the hospital with blood infections! But, for whatever reason, the CDK inhibitors have been hard for my body to handle.
Like you, I'm pretty darn healthy. I eat well, maintain a healthy weight, exercise regularly (although mostly dog walking due to time limitations but even on a low activity day I typically clock approximately 8 kilometers) and my blood pressure has always been excellent. I do drink wine - hell will freeze over before I give that up - but don't smoke, do drugs, etc. Too bad about those bone/pleural mets... Stupid cancer.
The funny thing is, I have found that at times being so healthy has its challenges. I often say that I don't "present" when it comes to illness. Health care workers frequently dismiss my concerns as they feel I look too "well". When I was on chemo in 2001 I was lectured by staff at the ER about the Cancer Agency sending their patients to emergency. They rarely felt there was any urgency despite the fact that my oncologist had firmly indicated I needed to go immediately if there were signs of infection. During the last blood infection I had when I was initially diagnosed the ER had me languishing in the waiting room for four hours - I felt like death - before finally sending me to the Cancer Agency. The general practitioner who saw me sent me home, telling me I had the flu. Fortunately they did take blood as 24 hours later my MO called to tell me I needed to come back - I had a blood infection and needed IV antibiotics. When I went back to the Agency the GP that originally saw me snapped... "I want to see those results!". I just looked too healthy in his mind. Uh... no... I was in hospital for three days, released on Christmas day if you can believe it.
Having said that.. I feel grateful that I am healthy otherwise as I know that is helping me to keep going over the long haul that lies ahead.
Glad to know the blood is starting to stabilize. Hope you are also feeling a bit more like your old self.
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Sadie, your post makes so many great points. First, let me say I want to wring the one GP’s neck who simply couldn’t believe you had an actual medical emergency. It’s very frustrating and I wonder if the doctor thought that as a woman you were looking for attention, or as a cancer patient you thought you were special or was it that you did not, as you say,”present” in the ER the way he decided an emergency patient should look.
I agree, overall general health probably does help in dealing with the mbc.
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Goldie - thank you for posting that picture. I have an appointment with my MO tomorrow and am going to ask her about the Ashwagandha. I feel like in general I'm doing okay on the Verzenio thus far. I'm not quite two months in on it. It sounds like several of you have gotten some positive results with this though so I'm going to check it out.
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Well, this is funny timing but it fit with our earlier discussion (sorry to hijack the thread for a moment). I had something happen today that I later realized was again a statement of visual bias. I was walking back to the office at lunchtime having made an unsuccessful trip to the pharmacy for something. Today was not one of my better days. Back and hip killing me and dealing with the Verzenio induced SOB, fatigue and some stomach cramps. Light changed as I started to cross the road and I noticed a car with a 60+ woman driving that moved halfway around the corner (wanting to turn right). She was further into the intersection than she should have been given the timing and number of pedestrians so I was keeping an eye on her, making eye contact so that I knew what she was doing. What came next shocked me. She took her fingers, put them in the corners of her mouth, pulling it into a smile! After I was through the intersection she yelled something out her window while she completed her turn. Seriously???
It was all I could do not to stop and say, terribly sorry but my cancer meds are beating me up a bit today. What a cow! I just kept going but... I realized after that it’s the same deal as that GP. If I had a cane, was bowed over, etc then she hear behaviour would likely have been different. Well, she is obviously a total whack job so perhaps she would have done the same thing.... people are amazing.
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Goldie, yes, that is the ashwagandha I take!
nnc, I started taking ashwagandha for my blood counts as I was in a bad place and worried about being able to continue with any more chemos. It is known to help blood counts and helped mine considerably in combination with veggie iron. It is also supposed to have anti-cancer properties. For me, what surprised me is that it gave me considerable amounts of energy. I feel like a new person. It is amazing.
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Sadie, coming across people like that woman in the car is so disheartening. For one thing, no matter how healthy, unhealthy, fast or slow a pedestrian is, why a person in a vehicle cannot be patient while a person or people walk from point A to point B is beyond me. Pedestrians have the right of way, of course, but what a shame there are some people who chafe at the idea. Common curtesy is not always so common. Some people are in such big hurries, or so inconsiderate and selfish and self-centered, their rudeness doesn’t even register to them. They must allow themselves to feel “more” powerful because they are in a car.
The Ashwagandha sounds like something I could benefit from, so may order it and see how it is. Same with the vegan iron.
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I look at as these things may help, and they can't hurt...right? I also got some electrolyte stuff.
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Hi Goldie,
I bought electrolytes when I first started Verzenio as it’s important to stay hydrated if the big D really hits. Fortunately, that was only an issue for a few days when I was on the high dose. To be honest, I was not keen on the taste! But then, at that time, nothing tasted good at that point! So glad that improved with dose reduction.
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Interesting, especially if you are Asian. No need to read unless you are geeky.
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capivasertib looks promising:
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Hi Goldie I had left eye watering like crazy when on Taxol - I think it is due to dry eyes accdg to my opthamologist - I used Blink eye drops and it decreased somewhat - I kept having to tell people I wasn't crying but leaky eye!
HI to all responders re inquiry re Ashwagandha thanks for feedback. I guess my only concern is it seems to impact testosterone and "Sexual function" in women which not sure if that would affect estrogen positive breast cancer as wouldn't want to negate verzenio treatment since it is so taxing on my body.
Re: doctors' disbelief of your situation - I remember when I had chemotherapy 25 years ago I complained about memory loss (now called chemo brain and widely accepted), and my MO who was actually quite nice said it wasn't due to chemo but probably it was due to "stress response" . We are the only ones who can report how we are feeling and changes in our body so push on!
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here’s my guess as to safety of ashwagandha: fine if you are on AI-inhibitors; possibly risky if you aren’t, since it does seem to raise testosterone, at least in elderly men.
I’m not on AI but still currently taking ashwagandha, by the way.)
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nnc, funny that ones eyes would water and then need eye drops! I did Taxol back in 2008, I don't recall my eyes watering then. Hmmmm!
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Goldie, my eyes water constantly. Frequently tears will dribble down my cheek. The watery eyes started on one of my earlier chemos, but they've worsened on Verzenio. (Been on Verzenio almost 20 months.)
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SchnauzerMom yes, I get tears running down my face as well. Need tissue near by to dab them all the time.
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Hi All,
It's amazing how much difference a dose reduction can make. As I've mentioned recently, my kidney numbers were getting very concerning with the creatinine continue to rise rapidly since I started on Verzenio and as a result, the eGFR was falling. My MO had me lower my dose 12 days ago and we are checking kidney function weekly for a month. Well, what a shocking turn around! Creatinine fell from 115 to 94 last Wednesday and today it was down to 82 - within the normal range. Woo hoo! eGFR is back in the high 60s.
It was a small adjustment to the dosage but has had a dramatic impact on the numbers. It hasn't made a lot of difference to how I'm feeling overall but gives me one less thing to worry about.
Hope you are all doing well.
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Sadie, I’m so glad the does reduction positively affected your blood work. You must feel some relief over that. Could you please remind me what the dose reduction was?
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Hi Divine,
The last dose reduction was from 200 mg once per day to 150 mg once per day. I started out on 200 mg twice per day which was a complete gong show for me. Dropped to 150 mg twice per day with some but not enough improvement and then had been on 200 mg since November I think. I'm still quite shocked that 50 mg could make that much difference to my Creatinine. Let's hope it doesn't make much difference to effectiveness!
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Today I got the results from the ct and bone scan from last week. After 5 1/2 months on Verzenio/ Aromasin, it did zero, zilch, nada, nothing to prevent further progression of bony metastases. They are even more widespread than before. It was last March that my scans showed progression and I started with the Ibrance , then moved on to V. So, for the past year, I've basically been on ineffective treatment. Neither the Ibrance, Verzenio or switching to a different A/I did a thing for me. I'm moving on to Xeloda.
The news is discouraging but the whole year is behind me now so there's not one dang blad friggin' thing I can do about it. And believe me, I want to use a whole lot of swear words here but am practicing restraint. I know you all understand the frustration. One good thing to note is the mbc is still bone only.
The CDKs were not a ft for me. Here's hoping for better results with Xeloda.
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glad it is bone only still! I will be joining you on Xeloda.
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Divine, sorry to hear about your results. It is unsettling to calculate how long one has been off of effective treatment after a series of treatments that don't work. I have been there. Good luck with Xeloda. It was a miracle for me after I failed Ibrance and when my liver exploded to 70% mets in a very short time 4 years ago and the most tolerable of all my (many) treatments to date, including hormone therapies. My mets have never been as bad or as aggressive since, despite eventually progressing on many treatments since then. I plan to go back to it in combo with something else in the future if I have the opportunity. You are in good hands with Madame X.
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Nkb, here’s hoping Madame X works well for us both!
JFL, thank you so very much for your words of encouragement; it helps me so much to know you had such good results with it.
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Divine, I’m so sorry that neither of the CDK inhibitors worked for you particularly given how challenging they have been in terms of side effects. As JFL notes, Madame X has been great for many. Hopefully it will do the trick to get you stable again.
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on palbo but likely pertains to Verzenio. Maybe Cure_ious would be so kind as to weigh in on its possible practical application. I’m sleepy after getting 2l of fluid removed from my r lung yesterday, and my phone screen is too small to read the pdf on.
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