Abemaciclib Verzenio for Stage IV
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3tree, Like Nkb, my cancer went to PR-negative in the bone biopsy and was less ER-positive, but nevertheless endocrine-sensitive, and I recall CDK4,6i help PR-neg cancers respond and keep the cancer ER-sensitive.
A paper from Nick Turner analyzing the progressions in the Monarch-2 trial showed that most of the mutations seen in the Ibrance-Fulvestrant combo were the same as those seen on progression from Fulvestrant alone, only a small fraction of Rb gene mutations were seen only in the combo and indicate resistance to CDK4,6i
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6368247/
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And as for neuropathy, I had some numbness in my feet for almost a year before getting the "frozen kidney stone in each foot" abrupt blowout that necessitated dropping Ibrance and staying on Faslodex alone for two months (definitely not recommended) and then added Verzenio at the lowest dose in Jan, bumped up to mid dose in the spring. The neuropathy slowly slowly faded but just recently jumped right back when I tried to go on the high dose of Verzenio.
One possible reason is the CDK4,6i are known to deplete vitamin B12 and vitD, and loss of B12 alone can give rise to neuropathy. And it is not necessarily reversible either, so its a good idea to ask for a blood test to check for those vitamins and try supplements, be aware that the vitamin levels in the extremities are lower than what you see on the bloodwork. It's my worst side effect of any drug, so far…
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Cure-ious - Thanks so much for the article reference and your comments about it. I like that you condensed the findings in plain language. I can get the gist of most studies, but sometimes they do just get too "technical and scientific" for me and this one is a bit over my head, but I can see where what you said lines up with what they have written. I do suspect that if these drugs are indeed not working, it is the anti estrogen component that is the culprit. I became metastatic while taking Letrozole. The onc did agree to one more month to see with new scans, so I'll go for that. In the meantime, I hope they check for the ESR1 and maybe PIK3 mutations.
I too have wondered about vitamins and neuropathy, but I did not know that the CDK4/6's depleted vitamins like that. I had actually wondered if I wasn't getting an overdose of B12 or B6, because those too, can cause neuropathy. I take a SAM-E supplement and last year the brand I take started adding B12 and B6 and at first I didn't like it at all, because with so many products adding vitamins, it could become an overdose issue. Each tablet has 100% of the daily requirement and I take 4 a day, so I'm getting more than necessary. I also eat a lot of salmon and sardines every week, and those too have a lot of B12 and B6. Interesting though, when I averaged what I was getting every day/week from these sources and compared them against the amount you need for an overdose, I don't even come close, so it probably is more likely not enough than too much, especially if the Verzenio is depleting. After what you wrote here, I'm concerned about the Vit D also. I take 2000 IU's a day as a supplement and then again all the fish add to that, but maybe that's not enough anymore either. Good idea of yours for me to see about getting those levels checked.
I had thought it was the Fulvestrant that was causing my neuropathy, because it's when I got that first loading dose that I really noticed it. I didn't start the Verzenio for another 2-4 weeks, but I did think it got worse when that got added. This time it's been worse since my last Fulvestrant shots. I had some permanent neuropathy from Paclitaxol when I did AC-T, and wondered if these new drugs weren't just aggravating the existing problem. It's just so hard to know what's what with all this stuff!
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3Tree, I should say that I had a shoulder arthroscopy around the time that the neuropathy went insane, I'd been off the Ibrance for a week or so before and after the surgery, and then the neuropathy went crazy when i started back in on the Ibrance again. It was definitely the ibrance, and the high dose Verzenio brings it right back, the nerves calm down on the lower dose. I guess the only way to know is to ask for occasional check of vitamin levels and be aware of the issue.
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@threetree Hi I’ve been following along. I’ve been seeing my Onc since 2009. I trust him and adore him. He’s always made me feel that I am being taken care of with the best treatment for me. In January when my CA-27 Cancer Antigen shot up after steadily staring at one number until Dec,, He called me right away to come in for scans, My Breast Oncologist is also a Hematologist. He KNOWS blood and and CDK4/6, Liquid biopsies on my blood. His knowing my cancer, made him want to treat my sudden Bone mets after 13 yrs NED. He wanted me on Verzenio 150 mg tab twice. Daily am &pm, warned me about the diarrhea and nausea, and encouraged me to take Imodium and keep him informed on this issue He also prescribed Fasoldex & Xgeva shots first, every 2 weeks then every 4 weeks after the first month. So far my CA27 has gone down, I’ve been scanned in Feb & April which have shown no progression and some have no change or diminished in size.. I won’t type any more here because I keep losing my posts UGH 😩. I’ll add mor if you have any questions. But if it were me I would get a second opinion and look for an Onc who treats Breast cancer and is a Hematologist if possible😉
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Shanagirl - As always thanks for your post. So sorry too that you've been losing your posts. I hate it when that happens. Sometimes I've written extensive responses to people and then lose it all, but have no energy whatsoever to do it all over again, so I don't and then I hate myself for not telling someone something I thought could be helpful. I thought that problem had ended with the switch, but maybe not.
The onc I've been seeing is both hematologist and oncologist and I've noticed that the majority around my area are. I do have some names and I am going to try to get a 2nd opinion, but the last couple of days I have just been so down with no energy; fatigue, depression or whatever. It's just hard to even get myself organized to make some phone calls. Also trying to plan and get ready for a trip to Anchorage in the middle of the month to see my old bestie whose been living there for decades now with her husband. She has stage 4 lung cancer and her husband has stage 4 esophageal cancer. She's been hanging in there a couple of years now and he's had more than 10, so I'm hoping for continued "success" for the two of them. I'm going with another old friend who is an RN and "fit as a fiddle". Thank goodness one of us will be in good health. I think I'm going to have to schedule my first Zometa infusion not long before the trip too, so I hope it goes well and that I don't have any complications.
I went from stage 3 to 4 in January like you, but unlike you I only had about 4 years in between. Looks like you are doing pretty well with the Xgeva/Verzenio/Faslodex so far. That's what I've been hoping for too.
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Threetree, Praying for your fatigue and that your spirit will be uplifted today. It is good to look forward to your upcoming trip to Alaska and that a healthy friend is going with you. What fun!
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Intolight - Thank you so much for all the good wishes. You know I usually use a "happy light" for 45-60 minutes a day, year 'round, and it helps tremendously with the blues and fatigue. I've spent the last several weeks weaning myself down, because I don't want to pack it for my trip - it's big and I don't want to impose on my friend and ask her if I can set it up and use her electricity, etc., but I'm looking into maybe getting a smaller compact one for the trip anyway (I know she won't actually care about my using it, but I still really don't want to bother her with it all), because I think the weaning down is a big cause of my increasing depression and fatigue.
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@threetree yes I too have been surrounded by a constant veil of fatigue and go thru a dark sad feeling after I get my Fasoldex and Xgeva shots every month, and I tend to isolate and have no desire to be in any social situations with friends or family. It’s also been a long hot summer so I’ve been staying in a lot not even wanting to go to the beach which I always have gone every day in the summer. So stage IV has certainly knocked me for a loop. My Onc is having me come in for scans on Thursday to see how this treatment is working.
I also want to say Hi to @candy-678 , @intolight , @cure-ious and all on this forum. Sending you virtual gentle hugs💗and wishing you all a day without too many struggles🩵
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Shanagirl - I've noticed that all of this has gotten worse since starting the Faslodex and Verzenio. I think Faslodex is the real culprit though, as these anti-estrogen drugs really afffect mood in a negative way. Interesting that you think the Xgeva might be contributing also. I'm supposed to start Zometa soon and am worried that that will just add to all of this.
I absolutley know what you mean about starting to feel down and then isolating and not wanting to see or do things. It's been warm here too, but not nearly as hot as the rest of the country. We've had lots of sun though, and like you, I'd usually be out and about in this, but just don't want to this summer and at the same time I think I'm missing some real good times, and who knows if it's my last summer or not, but I just don't seem to care. I was out on a drive a couple of weeks ago and it was beautiful day and I thought too that I should go to the beach, but I just told myself, "Nah, I'm just going home" when I could have had some fun in the sun. I'm realizing that part of this is just not caring too. That's a new one for me - to not care that I don't want to do these more fun and social things.
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Threetree and Shanagirl, I too am on Verzenio, Faslodex, and Zometa. Today I am having a big D day, but I am handling it. I have been on Zometa since the beginning, seven years, and I have very few problems with it. Trying to dust and do a little laundry today… But you are both correct. I noticed I am a little more depressed and have no desire to go out and socialize. I am, therefore, trying to make my home more contented. I get these spurts where I want to decorate but they are short-lived! We moved here one year ago and I honestly didn't think I would live through the move so I was not too energized to decorate. But after more than a year I feel like I will live a bit longer and should be able to enjoy it all. My DH is trying anything to make me happy. After 51 years I so love him!
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@intolight 51 years that’s great. I too am married 51 years and my DH has been so good to me. I was telling him today I really miss our 3 mile walk on the boardwalk. I don’t even feel like walking since January. No energy or drive, Our 51 year anniversary is Sept 23rd. Last September he took me on a 50 year anniversary getaway to Long Boat Key Sarasota. It was so romantic and we had such a lovely time.🥰Last anniversary was before Stage IV. No wonder we had such a romantic time😊
@threetree I was on Zometa infusions for a number of months after I was first diagnosed in 2009. The only thing I can remember is some of the bone pain. I was told the Xgeva is a monoclonal antibody that works on the bone mets and diminishes then bone pain. I do notice that my bone pain has lessened since last year, it was so bad I thought I had severe arthritis. Little did I know.
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I agree- I don't care about as many things and just want to stay home. we have made our home very comfortable over the years. this year is only 40th anniversary however.
But, I do want to say that when I do make the effort -it really cheers me up.
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Intolight - So sorry that you've got the depressive stuff from these drugs too! Also hope your big D day is improving. Wow, 51 years. When I got married that was the sort of think I hoped for, but divorce happened after 28 years. I never have remarried. It would be 47 this month if the marriage had lasted. I love hearing about these long marriages like yours even though it still causes me to get emotional about how I never got that and never will. You are very, very lucky!
Shanagirl - Congratulations for you having a good long marriage of 51 years also! I'd just so love it. Thanks for explaining that Xgeva is a monoclonal antibody. For some reason, I thought it was another bone strengthener a la bisphosphonates or something. They seem to give it for similar reasons. I should look it up and learn more about it. Good to know about the bone pain that can come with Zometa. Not really looking forward to this at all, but I've got osteoarthritis and have been getting multiple rib fractures.
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Hello, muy mom is on verzenio 150 mg since june 2023 (only three 3 months).
Since then she has had to discontinue treatment twice due to neutropenia, I think It is called. She has a Urine infection and sorry but I don't know how low the counts are, but very low. The put her on antibiotis and today she is feeling better
She is 67 and has been on treatment since 2006 ( several loco-regional recurrences, ovarian mets diagnosis un 2011 and liver mets diagnosis in june 2023).
She is currently waiting for the CT-scan results to see is verzenio is working or not, but i think It is affecting her immune system.
Just wanted to tell her experience, ask if any of you has had to discontinue treatment due to something like this (and if It happened often) and if you think that reducing the dose to 100 mg would help.
Alicia
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@alicia_en_madrid I’m sorry your Mom is having issues on her treatment with Verzenio…I have been on it since January and so far my scans have shown it’s been working. I’m also on Xgeva and Fasoldex injections every 4 weeks. My bloodwork has been normal. The one thing that I have to deal with is the diarrhea. But I’ve managed with Imodium. I hope your mom’s scans turn out to show that the Verzenio is working.. I’m on 150 mg twice a day.. I hope this information helps.💗 god bless you and your mom.
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alicia, I have been on Verzenio since September last year. I started at 150 mg 2X per day but dropped to 100mg after only 3 months. I had extreme fatigue at the time—where I couldn't even walk across the room. I have been doing much better since and my scans all showed no active cancer anywhere since January. I still have diarrhea daily and some manageable fatigue. Four months ago I had to go off for two months because of a UTI and pneumonia. Once those cleared I was put back on it—two months ago—at the 100mg dosage. My latest scan last month did show some slight new growth but we are cautiously optimistic it was because of my two-month hiatus and hope being back on Verzenio knocks it all back. I have been on oral meds only the past seven years since my initial diagnosis. I am currently also on Zometa and Faslodex. Hope this helps.
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@alicia_en_madrid I was on 150 but dropped to 100 for neutropenia. I couldn't tolerate Ibrance, went too low even on the lowest dose. I had some progression but not much so MO didn't want to change Verzenio, but added Faslodex. I'm not sure which to blame but I'm really fatigued. It comes in waves. I haven't had too much diarrhea but I tend the other direction because of spinal cord damage. The D comes in waves too.
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Thank you for your answers. It seems that the Verzenio has not worked for my mom and in just three months my mother has progression.
Thanks again
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See was also on Faslodex. I have redo the signature, but I don't remember allí the treatments she has been on.
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Alicia - 3 months might not be enough time to tell. I've read where some need up to 6 months to see benefit. My oncologist wanted to stop my treatment at 2.5-3.0 months when a scan showed both improvement and some small new progression. She said 2 months was enough time to tell. I pleaded to keep going another couple of months at least and she reluctantly agreed to 1 more. 6 weeks later all scans said I was now stable, so I am continuing for now. That oncologist is on maternity leave now and I will be seeing her substitute for the first time later today. I'm curious about what he might have to say about all of this,
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Alicia, I started Letrozole early Feb 2021 and Verzenio mid March. Although my CA 15-3 marker was within standard range after being on the AI for 2 months and Verzenio for 1 month, my CEA did not test within normal range until August. My first PET scan after starting treatments was not until June (after being on the AI 4 months and Verzenio 3 months) and did show “markedly improved”. I agree with Threesome that you need to give it some more time.
Threesome, keep us posted on what the substitute onc says.1 -
Alicia, so sorry your mom has progression so quickly. Praying they will find another med that will work better for her. Let us know!
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I've been on Verzenio since Dec last year (switched from Ibrance after progression in bone mets), Letrozole for six years now (formerly with the Ibrance). Last week's PET scan shows an increase in uptake on the two bone mets. Will have an MRI in a week or two, to determine exactly where the tumors are in relation to my spine. Next step is either radiation of the two spots, or changing from Verzenio to Piqray/Faslodex. Muddying the waters is the fact that I am in a trial/study for bone mets, and because of that, I get PET scans every six months. Oncologist says regular protocol is CT scans, not PET, so this new progression wouldn't even have shown up, if I wasn't getting PET scans. To me, that means we can do a wait-and-see, but neither my onc. nor the radiation oncologist are suggesting that. Has anyone experienced anything similar?
I really don't want Piqray, even though oncologist says she can get me in a study about lowering diabetes risk while on the Piqray, that will supply either medication or pre-packaged, low carb, meals. She seems to think that's a great "get", but I know myself. I don't do deprivation well. Eating well is one of my very few vices (for lack of a better word), and honestly, if it was presented as a life-or-death decision, I'd still choose good food! High blood sugar risk is really high on the Piqray, requiring weekly blood tests, and doc says she had one patient hospitalized because her levels spiked on Day 6!!
Radiation seems like the easier choice, but I hesitate because I've had zero pain, anywhere, and I don't want to "waste" this option at this point. If I get the radiation to the spine and hip, and later develop tumors in those areas that actually do cause pain, I won't be eligible for radiation at those spots.
I liked it better when I didn't feel like a cancer patient… throughout the five+ years on Ibrance, I felt perfectly fine and had minimal side effects. I guess karma comes around eventually, though I do still feel 100% blessed and incredibly lucky that my side effects and pain are practically non-existent…
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I've been off Verzenio (100mg) since 10/2021, but wanted to post an update about two side effects that developed while on it. It kept my cancer in check (no progression), but I developed low Vit B12 and low Vit D (even on a daily gel tab supplement). I assume this occurred in large part due to the diarrhea and effects on the GI system. It took me a while to reverse these levels after switching to the sublingual route for both. I just rechecked both levels in prep for the coming winter and more inside living. Both B12 and Vit D levels are now solidly within normal range. My Vit D is 70 on 5,000 iu/day sublingual.
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As I previously noted, I have been on Verzenio since March 2021. Neither my Vitamin D (61.5) nor my B12 have gone down while I have been on it. Nor have I experienced any diarrhea while on it. The only side effects that I have had is that my WBC has been between 3.2 and 3.9 (standard range 4.0 - 10.5) and my Creatinine on a standard range of .4 - 1.10 has varied from 1.04 and 1.21. Although my GP says I need to be concerned about both my WBC and my kidney, my oncologist/hematologist has told me I am not immunocompromised regarding my WBC and has assured me that there is no damage being done to my kidney.
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Going2BeatThis - Saw the substitute onc yesterday and he said the new scans all looked really good and that he had no concerns currently - yay! I mentioned how I was so glad that I had asked for that extra time to see if the Verzenio/fulvestrant combo would work. He skirted the issue of just how much time should be given initially and was very diplomatic about the regular onc having wanted to stop treatment and move me to IV chemo. He noted that "There had been a concern about what appeared as new bony metastasis", implying that her concern had been justifiable. Well in my opinion justifiable maybe, but reasonable, no. While she did reluctantly agree to some additional time, that I stretched out as long as possible, this benefit of the combo (transient as it will likely turn out to be, since it always fails at some point) would have never been evident if I had not been reading a lot and advocating for myself. If I had just taken the "whatever you say dr", approach, I would have completely lost my shot at the AI's and CDK inhibitors altogether and been on IV chemo now! I don't like that thought at all, and I can't help wondering how often this sort of thing might be happening to other people in all kinds of medical situations.
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threetree, that is great news. Thanks for sharing with us how advocating for yourself is so important.
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Threetree, you have to do what you think is best. Advocating for yourself is very important. So happy your scans were good. My onc was going to put me on IV chemo when it showed mets to my spine, but an MRI first showed only hemangiomas on the spine. I even had the port put in and met with a radiologist for preparation. Since the spine spots were the only growth, she put me on Verzenio instead even though I was on Ibrance for four years. That was a year ago. So happy about that. Don't know what next step might be. My last scan showed minimal progression but we discussed that I was off Verzenio for almost two months so we went back on it. I have another scan next month. We shall see then.
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Husband - Thanks to you too. I've always been amazed at how much research and advocating you do for your wife. You are one in a million and she is so lucky to have you. You do the rest of us big favors too by sharing what you've learned, your thoughts, etc.
Intolight - Isn't the thought of moving to IV chemo a scary one? It will probably be necessary at some point, but the idea of going off these orals too soon, and especially if not really necessary is scary too. Sometimes those scans just don't tell the whole story, and the oncs then seem to assume worst case scenario. Maybe they have to, but sure hope not.
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