Abemaciclib Verzenio for Stage IV
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I am feeling near 100 percent. My wife finally tested negative for covid around a week ago. Her cough is slowly going away, but she is still feeling rotten. Fatigue, stomach problems (some of which is the abemaciclib), and now feeling chills and slightly elevated temperatures. She spends half the day in bed. It's really depressing and stressful to see. Not sure what I can do for her. She feels like its never going to go away, but I assure her that it will. It's been the worst viral infection either of us have had.
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Husband11- there have been some articles saying that rest is really important for recovery and many people push to normalize their activity and it can prolong recovery. Although for me the respiratory stuff cleared quickly with the Paxlovid, It took awhile for my exercise tolerance to come back and I did have a rapid resting heart rate for about a month, EKGs were normal- My DH and DS had easy recoveries however. I still took walks, but, noticed less energy for awhile.
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Husband11, I am glad you are feeling better but sorry to hear about your wife. I don't have Covid but do have this nasty virus that is also going around. I didn't get out of bed at all yesterday and am only up now so we can wash the sheets... Has she continued with the Abemaciclib this whole time or did the oncologist recommend a break? I need to call and find out what is best. Mine is a rebound cold and the first one started October 12th. I was just starting to feel better this past Monday when this hit me again.
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Husband11-because everything else you are going through isn't enough, right? This is mine and DH's second bout of COVID. We're vaxxed, double, triple vaxxed. The first one put both of us flat out and of course it took me much longer to recover than it did him. I know there are different variants of it going around and this one could have been a rougher one for you both. Please tell your wife to give herself some grace and to try to be patient. I know, it's so very hard to do with any of this, but it also makes you feel so very frustrated on top of everything else. Rest is sometimes a four letter word for me anymore. It's a love/hate relationship of knowing I need it, but not wanting to take it. Hope you're both on the mend very soon.
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Thanks everyone. She has not taken a break from the abemaciclib throughout this. For some reason, when they evaluated her for covid treatment, they ruled out paxlovid. I thought it was for fear of a drug interaction. Instead she got 3 infusions of remdesivir. Can't say it appeared to do anything, but who knows for sure.
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Get well soon everyone. My family has the latest big too so I have to stay far away ...
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Hello, all, I've been doing a little reading - I recognize some names from the Ibrance board. After 64 months on Ibrance, I had "probable" progression (wish they could say it was definite, but alas, not), with one or two potential new spots on bone. So I have switched to Verzenio, 150mg. Today is Day 4, and so far, so good.
I read the intro post, from "Z", and it made me tear up. She was one of the first people to talk to me when I was first diagnosed, back in 2017, offering advice and encouragement. It feels like she's still here, helping me with this transition to Verzenio... crazy.
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Hi ciaci. welcome to Verzenio thread. I find this med tolerable with the exception of fatigue and diarrhea. Both of these are manageable. I remember you from the Ibrance thread which I switched from over two years ago.
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Hi Ciaci!!
Well, I shall be happily joining you here, and ditto about Z, I miss her a lot!!!
I didn't have progression on Ibrance-Faslodex, but rather peripheral neuropathy in my feet, so for now I'm off all CDK4,6i and making sure my vitamin B12 levels are OK before trying Verzenio.
IntotheLight- Hi to you, too!!! How long have you been on Verzenio? I assume you are on the highest dose (given fatigue)-I had fatigue when starting Ibrance but it faded somewhat after a couple months as my body seemed to adjust to it, eventually I dose-reduced to 100mg and it wasn't a problem.
Given the neuropathy, I am thinking of starting with a reduced dose to make sure it doesn't affect my feet, but I don't know what the doses are, will go read about it all here, probably Zar has the answer for me in the header!!!
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Cure-ious, I have been on Verzenio since April. I started at 150mg but reduced to 100 mg after two months due to extreme fatigue (I couldn't walk across the room). My fatigue now is manageable so I will stay here. Starting in October I had three MRIs, a CTScan, a PETscans and a Bone Scan and all have come back as NED. (My oncologist was looking for the cancer not believing it was all gone.) The MRIs were chasing two hermangiomas on my spine which after a biopsy we now know are benign, and checking my brain because of headaches which came back clear. Z has posted in the Older Christian Women thread a couple of times and says she is doing well. I am now on B12 shots monthly to keep those numbers steady. Good to hear from you.
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intolight, the "Z" I was referring to, Zarovka, sadly passed away in Feb of 2019. She will be remembered forever.
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I miss Zarovka. She was so involved in researching treatments, sharing her ideas and struggles. She was a very caring person as well.
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I too miss Zarovka. She was special to me too. I apologize for mistaking a different "Z" person--Jean, who is also very supportive and encouraging.
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intolight, no apologies necessary - unfortunately, there are far too many people on this site / cancer patients to keep track of everyone enough to recall details at a moments' notice!!
So I met with the radiation oncologist for a recommendation about the two new "spots" found on my PET scan and confirmed with the MRI. She wanted to radiate both, went through all the procedures, side effects, etc, then said, "Since you've already started the Verzenio, your husband is having shoulder surgery next week, and your son is getting married in April, why don't we give the Verzenio 3-4 months to work on the progression? We'll re-scan in March, and if they're still there, we'll radiate after the wedding." Have I mentioned that I love my doctors at Sloan-Kettering in NJ? Apparently my oncologist had filled her in on everything happening in my life, and they decided together that this was the best course for my health and my sanity. I agreed!!
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Ciaci, Your oncologist is extremely special, definitely a "keeper"...
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After a good 4 year run, Verzenio has failed. Liver mets showed up during a “routine" PET scan. As a pharmacist, I always suggested FiberCon=calcium polycarbophil as an option for controlling loose stool. Ironically found with OTC laxatives, it's good for constipation or diarrhea. I took 2 tabs daily with lunch.
My ultrasound guided biopsy, done just before Thanksgiving, came back in the new HER2 low category via FISH testing. The MSK doctor who described the Enhertu trial at ASCO last June received a standing ovation for this significant advance in treatment. FDA approval followed soon after.
I'm now waiting for FoundationOne analysis to be reported. We already know that my progesterone receptor flipped to negative but maybe there's a genomic mutation to consider. We've all got to stay alive long enough for the next big thing to come out of the research labs!
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Vlnrph I hope another treatment is effective for you.
I'm dealing with a lot of fatigue. I'm wondering what others do to deal with it. Sleeping doesn't fix it. I had a PE recently so of course that added to things. I try to force myself to keep moving and do some light exercises. That's limited though because I have issues waking and also muscle cramps from the spinal cord compression damage. I'm going to stop working full time and hopefully that helps. Trying to push through doesn't help. I'm just getting really wiped out from almost nothing and it's frustrating. I take a monthly B12 shot.
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MKestrel, Are your red cell counts affected by V? My oncologist said fatigue was the top reason patients reduce dosages, that diarrhea was more easily managed...
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mkestral, Yes, I have a lot of fatigue on Verzenio. I was reduced from 150mg because it was extreme. I am on 100mg now and tolerate it, but you are correct that sleep doesn't help. I am also on monthly B12 shots. The diarrhea is inconsistent.
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Hi Cure-ious and intolight. My red cells have been fine, white low but that's expected. I'm grateful that diarrhea has not been a huge issue and there has been no progression on scans. It's just hard to deal with the constant heavy feeling and weak. I'm on 100 mg, lowered because of anc too low. I couldn't stay on Ibrance because of that.
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My wife continues to have a terrible cough after getting over covid. It seems like an eternity. And she hasn't gotten her energy back either.
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Husband11, sorry she is struggling so much. I coughed a long time and I didn't even have Covid, so maybe she had Covid and something else too? Will continue to pray for her.
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Hi All. I am leaving the Verzenio forum, as I move to Trodelvy.
When I read forums, I often want to know the summary of people's experience with a drug, so here was mine on Verzenio.
I did Ibrance for 2.5 years, 2016-2018. Thus, doing Verzenio was always questionable for me... whether returning to a cdk4/6 would work.
I got three months of incredible results, tumor markers from 1700 to 450. And then it stopped working.
I found 300mg/day impossible (because I spent the entire day in the bathroom with the D and was so exhausted I could barely move).
225mg worked great for me. (I split pills and was taking 75mg, 3 times a day).
That said, I would say this was one of the hardest drugs for me to get a grasp on the side effects. The D problem was a problem. I basically eliminated all fiber from my diet. I also took Imodium every day, with my pills, preemptively. I had to add magnesium supplements or the leg cramping was intolerable.
Once I got a handle on managing the side effects and the dosing, it stopped working. Ha.
I would have been happy to continue it forever.
Wishing everyone good health, and minimal side effects.
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Hi all, I'm relatively new to Verzenio in combination with Letrazole after lumpectomy, axillary node dissection (5/27 nodes positive), surgical biopsy results bumped me up to stage IIIA from IIBpre surgery, chemo: 4 AC and 12 Taxol, followed by 33 radiation treatments. I started Letrazole at the start of radiation and started Verzenio after the completion of the radiation. I just completed week #3 on Verzenio.
So I'm not actually stage IV, But my MO is cutting edge when it comes to the latest treatments. I'm having some mild issues with D and very grumbly abdominal noises but after reading the original post I believe I can benefit from more fluid intake, electrolytes and some Probiotics.
I'm wondering how many of you are on Verzenio plus AIs with recommendations to also take Zometa (not Xeloda). I'd love to hear about your experience.
Catherin
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oops! I meant Zometa…not Xeloda!
Catherin
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Husband11- I wonder if a steroid inhaler would help your wife? often viral infections cause an inflammatory reaction and the cough can last for weeks after the infection is cleared. I also wonder if she got RSV along with it or some other double whammy. It took me a while to get my exercise tolerance back, didn't have much cough though, took Paclovid. coughing is exhausting.
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kathrynw1thasea,
Others will have more informed suggestions, but here are mine:
Is your doctor recommending Zometa (IV infusion) instead of an oral bisphosphonate like Fosamax? When I was dx Stage 1a and known to have osteopenia, and Arimidex (AI) was recommended, it was suggested that I start Fosamax (oral bisphosphonate), which I declined.
I started Zometa infusion when I was dx Stage 4 with bone mets. It was described to me as "bone glue" and apparently helps control bone mets pain. After long term use, it does carry the significant possible side effects of jaw bone necrosis and spontaneous fracture of the femur head (you should look these up). My suggestion: prior to starting either oral bisphosphonate or IV Zometa, have a dental exam (maybe by a periodontist) to confirm healthy teeth and gums and no hidden periodontal disease.
I had generalized muscle aches briefly after the first two infusions, but after that I've tolerated it well. I started getting an infusion every three months and now, after 3 years, will get it every 6 months to help reduce risk of jaw bone necrosis and hip bone fracture. If I remember correctly, dose is determined by weight and creatinine blood results (i.e. kidney function)....and "elderly" age might be a factor also.
Regarding diarrhea control while on Verzenio. I'm no longer on Verzenio, but besides using the anti-motility drug imodium, and eventually asking for a dose reduction, the tips shared by others that worked best for me were: 1.) increased fluids (water), a habit which I still follow and 2.) daily probiotics. The probiotic that worked best for me, and I continue to use daily, is Kefir. I drink 1/3 cup with every meal to keep my gut microbiome fed and replenished. I buy plain, unsweetened kefir, from a local store. I just learned about goat milk kefir and plan to try it. I also just learned about Banatrol, available on Amazon. It's a non-antimotility food based supplement with claims that it helps reduce nausea, diarrhea, etc. I have never tried it.
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I have been on Zometa from the beginning of my dx six and one/half years ago. My oncologist checks my creatinin level carefully and my dentist watches for the necrosis. I get the infusion every three months. I have learned that a slower drip on the infusion helps with the aches the next day (one half hour instead of 15 minutes). I do struggle with D and fatigue with the Verzenio but it is manageable. I just have to be strategic with my activities.
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Curious and intolight -- I have noticed a slow and steady decline in my red blood cells. Every month they creep down across all counts. My oncologist says he expects that with Verzenio. I had really only been watching my white counts when I first started V but now I routinely monitor my entire CBC and pay close attention to the red count and the hemoglobin also.
katherynw1thasea - It sounds like your MO is very forward thinking. Not sure I can offer much advice. I'm on Verzenio but not an AI or Zometa. I have been on Verzenio with Faslodex and Xgeva for three years and am what my MO calls in "stable remission" with those three as my first line of treatment. I hope it works well for you. I have never had any huge issue with Verzenio. I get diarrhea occasionally but it has been very manageable. I keep chewable pepto or a few immodium in my purse just in case but rarely need them. My biggest side effect is fatigue. I'm on the 150 mg/BID dose and my MO wants to stay there. Not sure if the fatigue is Verzenio related or anemia related, probably both. I manage with it but some days are worse than others and I have learned to rest when I need to and use caffeine as a crutch when I don't have the opportunity. I also second the advice to stay hydrated. That helps me with the fatigue from Verzenio and the aches and pains from Xgeva/Faslodex after my injections.
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mkestrel
I sent you a private message regarding getting Verzenio.
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