Abemaciclib Verzenio for Stage IV
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@linda3517 - I have been on Verzenio for 5 years. My WBC and RBC, have been consistently low, but not alarmingly so. My MCV and MCH have been consistently high - I asked my original MO about it and he was not at all concerned, and my new MO (new state) has never mentioned it. For the last two years, my BUN and BUN/creatinine ratio have been slowly and steadily climbing. When I asked the PA about it, she said my EGFR was great, so not a concern.
I don't know anything about shredded blood cells or aplastic anemia. I've never needed IV hydration or a blood transfusion. I hope they sort that out for you.
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@linda3517 I’m just popping in. I haven’t been here for awhile. I’ve been on Verzenio for 2 years and have haadall the usual SE’s like the. Big D, fatique, etc. But lately I’ve been noticing every month my labs are always flagged Abnorma. On My Chart. It’s always somthe ing wih the blood and metabolics. Also high Calcium. I’m seing my Onc tomorrow for followup and Falsodex injection. This will. Be the second month I’m off the Xgeva also because of dental issue. Nothing seems to go smoothely with Stage IV. I’m always worring about something. I’ve been confident. On Verzenio the Last 2 years and hope to remain on it to keep preogresssion away.💕
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Like Shanagirl, I've been on Verzenio for 2 years and like Seeq, have had some low red and white cells along with high MCH and MCV, but nothing that caused any need for extra anything. I have had some IV hydration off and on over the last few years due to low electrolytes, not Verzenio. My onc has told me that the low numbers aren't really "anemia" as long as the hemoglobin number is good. I don't totally understand it, but he says that just because some of those numbers are low, it doesn't always mean anemia.
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@threetree Yes, my numbers have been “abnormal” lately on My Chart but my Onc. Doesn’t seen concerned. if I get One or to High Or Low, and the rest is Normal I think it's ok.
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I’m off Verzenio & Xgeva temporarily while on the Amoxicillin and I thought I would feel better, but I did have the Fasoldex injection last week and I really feel like crap anyway. Very Tired, low mood, lots of bone pain and weakness going upstairs. Over the past weekend on Saturday we went to a big neighborhood BBQ and pig roast. Everyone brings a dish, I brought 3 trays of spaghetti & white clam sauce. So my sweet neighbor set up the tables and reserved. One under a tent forme and some Others with medical issues. We laughed and said this table is resererved for the informed. We had a nice time but I just can’t sit for more than 2 hours withought being in pain in my spine and hips, and seatbones, where all my mets are. So we ended up leaving a little early.
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Shana - Re the Verzenio labs, I always have a couple lows like sodium and calcium, but like with you, there are never any major worries. I think that's routine from what I'm experiencing. I think some of the troubles I've had these past couple of weeks (gastrointestinal, lots of joint pain, fatigue) are from the shots I got almost 2 weeks ago now. Hoping for improvement now until the next round.
So glad you got to your neighborhood get together. Sounds wonderful! Nice that you got a "reserved" table. You were a guest of honor 😉. I hear you about just getting so sore from sitting that you have to get up and go too. Sounds like a nice day out all in all though.
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Seeq - I'd love to get the 5 years on Verzenio that you have had. Keep up the good work!
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@seeq me too. I’ve had a little over 2. Yrs on Verzenio.I. Have always felt safe on the Verzenio. I’ve also heard that it is a blood brain barrier which acts as a block to anger cells going To brain.
@threetree Yesmy calcium is always way high, and other abnormal numbers are Bun.
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@goingtobeatthis I am just seeing your message. Best to you and thank you for all of your help and inspiration.
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Quick question. Has anyone experienced any bladder problems on either Verzenio, or Letrozole? Or even Zometa? Thanks for any info.
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@marcials1 - I had 2 UTIs last year (probably actually only 1 that didn't quite clear). I understand the reduced estrogen can increase the risk. I started taking cranberry supplements (at the suggestion of one of the nurses) and Culturelle Women's 4 in 1 probiotic. No problems since then.
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Thanks @seeq I have taken an at home UTI test and it came back negative. Not that I trust that 100%. I don't have many of the UTI symptoms however. Mine is more pain in my low abdomen and lower back. I had a thickening of the bladder noticed in my last CT scan so guessing I have more going on.
I have been taking cornsilk as suggested by a nutritionalist and plenty of cranberry juice but I will try the supplements and probiotic as well. Just in case….
Thanks again.
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@marcials1 - I have never tested positive for a UTI, even when I've had what I thought might be one. I have fresh (have to get at natural foods store) probiotic sauerkraut everyday with my lunch, and I also have a bowl of probiotic Greek yogurt every day (afternoon snack). I'm convinced that this has pretty much saved me from UTI's and the "Big D" that comes with Verzenio. I would highly recommend probiotics for sure. I have gotten some bladder pain that I have come to associate with just having low estrogen. I also think I can get some bladder irritation from certain spicy things like garlic stuffed olives. I've eaten those and had what I thought might be a UTI, but then as soon as I stop eating them, the bladder symptoms all go away. I read that garlic can be a bladder irritant, s can other spices, etc. I used to drink a lot of cornsilk tea and I really liked it, but ever since the cancer I've had problems with low potassium and sodium. I learned that the cornsilk tea, in spite of how helpful it can be for UTI's can just suck the potassium right out of your system, so I rarely drink it anymore. I actually just plain like it as a cup of relaxing tea, but …. If you don't have any electrolyte problems like that though, I thin corn silk tea is a real good bladder health thing.
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Thanks @threetree I'll try the probiotic sauerkraut. I have had it in the past and I really like it. Will try the probiotic yogurt also. I eat basically bland but probably eat more spicy than I should when my husband cooks! And I agree the low estrogen as you and seeq said probably has something to do with it. Seems odd that after after more than I year I'd develop this issue now though? It may all be unrelated as my oncologist is insisting it is. But I don't trust her. Thanks again for your suggestions.
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@marcials1 I am back on letrozole after a 3 weeks break during which I had no more UTI-like fullness feeling and consistently decreasing urinary urgency to the point of zero bladder leaks over the course of 1.5 weeks. Letrozole definitely causes urinary issues. After just short of 3 weeks back on letrozole, I can report that the side effects are fully returned as of today.
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Wow. Thanks @kathrynw1thasea. A few questions:1) How long have you been on letrozole? 2) Did your oncologist suggest your 3 week break? 3) Did you have in addition to the bloat any lower back pain? 4) Did your oncologist have any suggestions to relieve this letrozole side effect?
I hope you get some more long term relief. Best wishes to you. And thank you again the information .
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@marcials1 I’ve been on letrozole since mid August of 2022 (just short of 3 years). The side effects had increased over time and I had developed trigger thumb just like a number of ladies in the Bonded by BC online group. My MO indicated that the AIs can cause this so I took steps to have surgery after watching many ladies go through the steroid shots with little to no permanent relief.
As I recovered from the surgery, I tried to build up my walking stamina in preparation for a 3 week trip to Europe. It wasn’t going well, so I asked my MO via health portal about taking a drug vacation. Not getting a quick answer, I decided to test it without consent. Two weeks into the test, my side effects were fading and I was making progress. Finally my MO’s PA responded by saying a 3 week drug vacation (but not longer) could be undertaken. I was 6 weeks away from my departure date, so I went back on letrozole until the day before my flight. Knowing things would get easier day-by-day, I paced myself and was happily surprised by how well I felt going into week 3.
I started letrozole again on July 13th. I did develop some pretty incapacitating lower back pain a few days before a scheduled colonoscopy on July 25th, but it eased with a good BM and went away completely with the prep for the colonoscopy. About 2 weeks on letrozole I had to start using bladder pads again and just the other day I had that pre-UTI feeling. I never actually test positive for the UTI’s and never get full blown UTI symptoms. It’s just an uncomfortable feeling. I’m starting to suspect that the AI is affecting both urinary and digestive systems in addition to the muscle weakness, joint pain and trigger finger developing in my ring finger.0 -
Hi @kathrynw1thasea thank you for all of the information. I wasn't aware of the trigger finger/thumb side effect. I'll be on the look out for that one as well.
I have blood work and follow up with my MO tomorrow so I'll ask her about the letrozole vacation and long term thoughts on dealing with this. I don't have an appointment with a urologist until the end of this month.
I used to walk 2-3 miles about 5 times a week. Now I'm lucky if I get in 1 or 2 times. week. I need to get that habit back because it does wonders. It's been rediculously hot so that has put a damper on it, but I can get on my treadmill. Just not the same mental benefits. I hope you got to enjoy your trip and sounds like you did. I may take a 3 week vacation from letrozole if my MO does not consent. My lower back and lower abdomen, especially right side need a break.
But about the bladder/UTI issue - I have not tested positive for one either. I purchase the at home kits. I have the other symptoms though. They come and go but mostly stay steady. Like you said that uncomfortable feeling. I have the muscle weakness, fatigue and some joint issues as well. I feel I can live with that although it is not fun. And the on & off diarrhea is not fun but is manageable.
Did your MO have any suggestion on relief for any of your UTI type symptoms? I'm curious what I'll hear tomorrow. I'll give you an update. Thanks again for getting back to me.
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I wonder what’s going on with the people who responded to this in 2018? Any news?
BC since 2004, MBC in 2015 and recurrence in liver in 2020. I’ve been on Verzenio and Faslodex since then for 57 months. Liver tumor shrunk, and no progression anywhere!
I ask my doctor if this is unusual and if I should be frightened about a recurrence and she never answers directly, except to quote the MONARCH trial results.
Anyone out there, or does the author of this thread have any more info? Do you think I’m on my way to CR? Side effects are almost non existent. Fatigue is about it, but I’m also 74.2 -
@shanagirl 13 years before a recurrence is astonishing, but that damn cancer seems to want to rear it’s ugly head. Verzenio and faslodex is working for me for 57 months. I pray I’ll be a lucky one with CR. I am feeling uneasy at this point because mine seems to recur every five years or so. Maybe the Verzenio will do the trick. I hope we hear from others who have had NED for longer than me. Hang in there!
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The doctors don’t answer because they honestly don’t know. We are all different. My grandmother was metastatic after almost 30 years of no evidence of disease. She was given 2 years but lasted almost 7. She was on a test drug and took it with Zometa infusions every few months. Sound familiar?
Nobody in the family knows what the pill was, but when she developed dead jaw syndrome from the Zometa, they terminated the pills too. That was about 5 years into her treatment. She had been doing really well up to that point. But the loss of all but 2 teeth and the pain from the necrosis got to be too much for her.
My point is that it wasn’t the cancer that killed her. My hope is that it was an early version of Verzenio or one of the other similar drugs that gave her those 5 good years. I’m grateful for every minute of those days and I hope that it’s doing the same for me. Thankfully I know to be careful about dental work, but it does terrify me and I am looking forward to that last infusion.
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Asking for a friend- Long story short. Newly MBC (everywhere lungs, liver, chest wall, all chest and neck lymph nodes) ER+, pr-,her2 - had initial 4 cycles of chemo with carboplatin (had really good response- everything gone except a couple of small liver mets).Was switched to Verzenio (100mg twice a day) and Aromasin. No side effects. But within 6 weeks could tell something wasn't working. (4 fold increase in tumor markers and excruciating backpain). Oncologist told her she just needs to bare it it all until next pet scan. Refused to do any interval imaging despite debilitating pain. 4 months of this and repeat pet ct scan shows widespread progression all nodes are back, more liver mets than previous, more lungs nodes, and new skeletal, widespread chest wall. Oncologist is telling us he thinks there is full ER resistance wants to put her back on systemic chemo. He didn't have her on full dose Verzenio. Haven't even tried Falsodex and Im wondering if this truly means she failed Verzenio or if any utility to upping the dose and adding Falsodex. So frustrated right now
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@scurred2020 , so sorry for your friend. It’s so heartbreaking when you watch a fiend whose battle has gotten tougher. I wouldn’t say she failed Verzenio. I’d say Verzenio failed her.
I was on Verzenio 150 with Letrozole (Femra) and the diarrhea was just awful every day. I was so miserable that I took a drug vacation for a week when I had a big three day business trip. I talked to my doctor who told me that studies were showing that people on the lower dose were getting better results and they think it’s partially because of the tendency of people to need the drug vacations. If you take your meds sporadically some of the little buggers get to survive.
I would say that the MO making her wait that long with that much pain was just plain wrong. Insurance may not have paid for the imaging at the same level as it did at 4 months, but some cancer grows fast and 4 month can be an eternity if you are in pain and emotional limbo. If it were me, I’d want to try more carboplatin. It was obviously doing something incredible the first time around. Maybe she needed the 6 cycle treatment rather than only 4.1 -
@kathrynw1thasea I agree the doctors don't always know. They are knowledgeable but we are all different and I feel like sometimes we are all guinea pigs being tested for what works on us. I have been on Verzenio and Letrozole for about 16 months. I have adjusted to both with ongoing but tolerable side effects. The bladder issue I was talking about a week or so back is a maybe infection of some kind. But the day I went to see my oncologist last week showed a sharp increase in my tumor marker CA15-3. So I had some additional blood tests done and next week I have a MRI of abdomen/pelvis. I even forgot to ask about the Letrozole being the bladder issue culprit. I was thrown by the double increase in tumor marker .
I bet your grandmother was on an early version of Verzenio. That jaw disease osteonecrosis freaks me out too. I have a dentist appointment next week. A second opinion because my previous dentist wants to yank a tooth. I have told them I do not need any unnecessary dental work because of the Zometa. They do not listen; don't care - just want to make money I believe. So freaking frustrating. My oncologist has told me to sideline the dental issue for now because we have enough to deal with - with the bladder and now the high rise in tumor markers.
@scurred2020 I'm sorry to hear about your friend. It's very hard to keep it all straight but we have to be our own, or our friend's own advocates. It sounds crazy to not get additional testing or imaging. Not even a CT scan or body scan or MRI versus PET scan? I hope that she is find answers at this point.
@lucysgirl I'm really happy for you to hear no progression.
Does anyone wonder why any of us had a long NED after initial breast cancer diagnosis and then MBC dx? I have read that is rather low percentage after being NED for more than 5 years. I was 11 years between. I'm just wondering if there is any common denominator.
Hope you are all doing well.
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@marcials1 My heart missed a beat reading that your dentist wanted to pull a tooth. That’s what probably triggered my grandmothers osteonecrosis. I would definitely get a second opinion. I requested a referral to a specialty dentist who treats osteonecrosis for an evaluation before I agreed to the Zometa infusions. If I were in your shoes, I’d ask for a referral to a specialty dentist. Not all dentists treat it with the seriousness they should. My grandmother won a very small lawsuit settlement on the grounds that her dentist didn’t take it seriously and she was not sufficiently informed by her oncologist at the time. There’s no excuse in my book for dentists to be nonchalant about the risk.
Who wants to be in that 1%? I have enough “rare reactions” to things. Low incidence doesn’t impress me. I’d love to know if there is some common denominator in the MBC cases. My grandmother went over 2 decades before she was MBC. She and I shared so many “rare reactions” that I am hoping for a long period of NED just like her. But I’m cautiously optimistic on that front.1 -
@marcials1 I forgot to update you on my UTI symptoms. It was a bladder infection after all. The antibiotics knocked it out very quickly. I still get that uncomfortable feeling now but it’s definitely improved since getting rid of the infection.
I’ll be having a detailed discussion about letrozole with my oncology team in early September. I’ll definitely share what she says. I’m supposed to be seeing the PA but I’m using the messaging portal and it’s Journal feature to make sure I get the most information from the MO that I can.I ended up in the ER yesterday with “sciatica” pain in my right leg. It was a very unpleasant experience. They said AIs can trigger sciatica-like symptoms. Joy! What really makes me mad is that it felt like the folks at this particular ER were just interested in getting patients out the door. I wasn’t given enough medication to get the pain under control before they booted me out the door. I had been treated like a druggie at an ER when I was in my 20’s and suffering from a migraine. Until I had a neurologist who made sure my medical records reflected my condition, I never went back to an ER for an unbearable migraine until my 30’s. The neurologist was horrified when I told him my self-treatment for really bad migraines was to hit myself in the head with a blunt object. Anyway, I won’t be going back to that particular hospital again.
My GP has put me on a course of steroids starting today and recommended reducing the 300mg gabapentin 3x and terminating the naproxen 500mg 2x that the ER put me on. Driving is extremely painful and I’ve had a pain level between 6 and 7 all day. I gave in and applied generic Voltaren to my leg and went to bed. I’m curious to hear how many ladies have developed sciatica while on AIs.
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Had my 58th faslodex injections today! Blood work showed high creatinine and low GFR.
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Hello - My cancer recurrence (since 2010-2011 lumpectomy/chemo/radiation/tamoxifen/arimidex 6 yrs) is now MBC+bone metastisis diagnosed the end of January 2025. I have been on 100 mg Verzenio pills since February 2025 (along with monthly Faslodex injections and 3-month Zometa infusions). I keep hearing from the oncologist and the infusion center nurses that things "level out" around 6-9 months, but really? Is the body really adjusting or is it that we are finally figuring out how much and what we can and cannot eat? I am on a very strict no dairy/sugar/gluten/nuts/legumes diet to prevent the constant stomach ache and only have severe cramps and diarrhea now after the monthly Faslodex injections. This makes it extremely hard to get the 20g protein I need 3-4 times a day for bone healing, per both a nutritionist and my cancer physiatrist. My cancer markers are going down per monthly bloodwork and I am extremely grateful for the treatments although it has been very challenging. I will not be traveling for the holidays this year, as I normally would, because of the injections schedule right at holiday times and constant worry over the G.I. issue that can still rear its ugly head at unanticipated times. How is it going for you? Hair thinning? Stomach issues? I love reading the posts of long-term Verzenio users. Gives me a lot of hope, thank you!!!
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@tbos805 I learned that taking the Verzenio doses exactly 12 hours apart did help with diarrhea. I was able to taper off twice a day, sometimes 2 capsules of Imodium doses in a very short time and then down to roughly 1 capsule every 2-3 days. Of course if I ate something greasy or leafy I had issues, but I planned ahead for those days. The cramping also got better on the 12-hour schedule. I found that even 30 minutes off schedule could affect my results.
When I first started on Verzenio I was on 150mg and while it did get easier to tolerate after about 9 months, I was tired of being afraid of being too far from a bathroom. I was switched to 100mg and things got better, then they told me to try the 12-hour schedule and my life changed dramatically. I know of some women who have switched to the 50mg dose and gotten better results after trying to adjust to the higher dose.
Here’s hoping for some improvement when you get further in your treatment.1 -
@kathrynw1thasea yeah my prior dentist (just stopped going there after last visit) never ever acknowledged my Zometa and jaw disease concerns. She brushed over it any time I mentioned it. I knew I needed to get away from her. My oncologist has found me a dentist, hers actually, and I have an appointment with him next week for a second opinion. Whatever the decision is, I will not be acting on any type of oral surgery anytime soon! Too many other issues to deal with. What happened to your grandmother is awful and unforgivable. I'm glad she won a lawsuit and that still does not make it OK. Greed is disgusting and doctors are certainly not exempt.
So you did have a UTI after all. Glad the antibiotics knocked it out. We deserve the breaks when we can get them! But an ER trip is not what you needed. What you dealt with is horrible. What is with the medical field? Like you said it's the get us in & out and on to the next one philosophy. I'm fed up and I now let it be known. I now have two patient advocates because of some of the crap I've dealth with. I'll spare you the details!
Yes please let me know how your Letrozole discussions go. I may be on a totally new regime depending on how my MRI, CT and body scans go in the next few weeks. I am used to the Verzenio/Letrozole routine and hope to stay on them but if they are not working then I guess I'll see what's next. I had some blood work done to see if there is the possibility of some type of immunotherapy alternative. So it's wait and see time.
Good luck with the steroids and your sciatica…hoping you get that under control. Keep me posted if you think of it.
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