Abemaciclib Verzenio for Stage IV
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AJ - I'm following the story of your breathing issues here, because I too am wondering a bit about the Verzenio and lung issues. I've got a dry cough now, but no shortness of breath at this point. Supposed to get new scans in early December and at this point I think I can wait until then, but something does seem to be going on. Wondering if just a dose reduction could help? I'm sorry that your problems have reached the point they have. I'm really hoping they get this figured out soon for you and that there is a solution that doesn't involve having to move to IV chemo or anything. Again, maybe just dose reduction? Will be thinking of you on Tuesday. Good, good luck!
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@AJ and @threetree - I have had a dry cough for quite a while now. Was also concerned that it was from the erzenio. Everytime I mention it to my oncologist, she says it is nothing. Saw my Pulmonologist last month who also said it was nothing after listening to and looking at the x-rays of my lungs. Hope you both get it figured out soon and that it isn't from the meds or anything serious.
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Going2BeatThis - Really nice to get your input - thanks. I've had this cough for awhile and I mention it at my appointments, but no one seems to really see anything to it. Also, I've had scans, etc. multiple times since I've had this cough and those "ground glass opacities" sometimes are noted, as AJ mentioned, and what I was told was an insignificant amount of pleural effusion, but again no one seems to think there is anything serious going on. Every time they check my lungs, they say they are clear. This cough just lingers though, and then it makes my chest sore from coughing and then I get more worried. With these drugs and their side effects it's just impossible to know what is just annoying and what is serious - can't ever tell what's what. I just hate it!
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@threetree , I’ll keep you posted about my lung issues. I’m with you, hopefully no switch to iv chemo!
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AJ - I'm just realizing that some of my cough issues are related to sinus problems and really bad post nasal drip. Any chance that you "just" have anything like that going on? I'm finding that the worse my post nasal drip gets, the worse my cough gets. As I get the sinus issue under control, the cough improves but doesn't completely go away.
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This might not apply to either of you, but if you had COVID, the cough can linger for a very long time as can the fatigue and other side effects. My husband still gets fantom smells and he had COVID 3 1/2 years ago.
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Just weighing in here on chronic coughs - the 2 most common causes are post nasal drip (treated with saline and/or steroid nasal sprays) and silent acid reflux (treated with drugs called PPIs). Usually have to use for at least 4 weeks to note improvement. Not sure if you’ve gone here already, but something to discuss with your care provider if you haven’t.
certainly lingering inflammation from viral illnesses can also contribute - but should usually resolve in 12 weeks (aside from long Covid - a whole new beast).
lastly is a common side effect of drugs called Ace inhibitors (ramipril, etc). Super common and often missed.
hope this helps!
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@mswife - good to know. Thank you for sharing.
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@threetree , I also have the post nasal drip and use saline nasal spray to minimize it. I cough but not a lot. No this issue is with my lungs. It hurts to take a deep breath and I get really out of breath exercising. Sometimes I gasp involuntarily like I need an immediate hit of oxygen
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Hugs to you AJ. I hope you get some answers and are able to feel better soon. My cough last year was PE.
I'm having more menopause type symptoms or else just plain overloaded with everything. It seems worse since Faslodex but maybe also I'm finally getting the real deal meds or not. I'm not ok and don't feel able to talk about it because everyone around me is also not ok, stressed and depressed. I need to go back to the mountains immediately. I was even moody there too though. I can't go hike and ride it off, my legs still hurt lol. I don't want antidepressants that make me gain weight.
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My wife developed a cough while on verzenio, it seemed to follow a viral infection. She has since switched to xeloda, and the cough has only gotten worse. CT scan shows a minor amount of pleural effusion. It did show some lung congestion 6 months ago, but that has resolved. Cough has only gotten worse. She has tried steroid inhalers, antibiotics, gabapentin, prescription nasal sprays, antihistamines, guefenesin, ephedrine, clenbuterol, mullein, tiger milk mushroom, NAC, cough syrups of every type. Its so bad she is pretty much bound to bed. If she gets up to eat or pee, she goes into a terrible coughing fit. We now have a pulmonologist, be he can't pinpoint the cause.
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@husband11 , sounds so frustrating! In your pocket.
I just got back from my oncologist. She’s taking me off the Verzenio for awhile and sending me to a pulmonologist. Glad we’re taking some action. I’ll still take the Letrazole
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Husband11 - So very sorry to hear about your wife's cough situation. I had no idea it was that bad - poor lady! I had read where you mentioned it before, but again, did not know it was as bad as you describe here. I am sure hoping that someone somehow figures this all out for her.
AJ - Good to at least be moving forward with something. Really hope the pulmonologist can pull it all together and find a solution. Re my own situation, I do think it is primarily a post nasal drip problem. Like you I do saline sprays, etc. Nasal irrigation has worked the best, but couldn't do it after the fall I took (more able now), so switched to Flonase at dr's suggestion. That was a big mistake as steroids and I don't get along well at all. I had big troubles with nasal steroids years ago, but decided to give it another go, since PCP was so convinced they are safe. Got bad side effects within just a few days and stopped the Flonase (deja vu all over again). I'm back to nasal irrigation now, but it's not as easy as it used to be, since I've got all sorts of spine problems (fractures, mets, degeneration, etc.). Good luck with the pulmonologist!
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@threetree , hope you can figure out the nasal irrigation. It works the best for me too. I also do Flonase
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Waiting for a call from pulmonology. My oncologist is pressuring them to get me scheduled for a bronchoscopy next week.!
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Bronchoscopy scheduled for tomorrow morning. Fun
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Thanks @shanagirl ! It went well. Sedation is key!
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Hi all, I have a quick question. Does anyone here have knowledge or experience with fatty liver infiltration due to the use of Verzenio? How serious is this condition, and how does it affect one's treatment? I've been in stage 4 since 2019 and have been on Verzenio since then. My recent scans show, "The liver has a lower attenuation than the spleen, suggesting an element of fatty infiltration. Please correlate with liver function tests."
I did some research and found that non-alcoholic fatty liver can occur when using certain breast cancer medications like tamoxifen and Verzenio. I was thrilled to be in a NED condition, but now I'm concerned about this infiltration and the possibility of needing to stop Verzenio, which kept me clear from my metastases. Please share your advice.
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Fatty liver is quite common in North America, even without meds like verzenio. I would say most people over 40 would have some fatty changes if they had a CT scan or ultrasound done. Most of the time, nothing comes of it.
liver function tests would be the next step, to see if there’s any obvious inflammation or impairment. Hopefully this is just an incidental and meaningless finding!
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Bronchoscopy results show no infection. So starting prednisone tomorrow.
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AJ - So glad to hear that there is no infection! That's real good news.
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I’ve been off the Verzenio for awhile and on steroids since Tuesday. I must say that I feel fantastic. I didn’t realize how much the Verzenio affected my quality of life. My lungs are noticeably improving too. I’ll take it!
although I’m a bit nervous being off the v
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@AJ Wow, that’s great you feel so much better being off the Verzenio! My Onc said I could go off for a week when I was away in Florida to visit family. I did feel so much better. You, know it really does affect your quality of life. I’ve been feeling lousy since going back on since Oct 10. The extreme exhaustion and weakness is overwhelming, that just gets worse with the Xgeva and Faslodex shots every 4 weeks. Every day I make a plan to do something and bam 💥 the Verzenio keeps me in the bathroom all morning and throughout each day.. and in between. Today has been like that and I have a crampy stomach now. I’ll hang out in my room with my little pugs, Imodium, a heating pad on my tummy and the TV. Ugh, this is my life now. 🙁
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I went off it for a couple of weeks and felt so good I didn’t go back on it. It’s been over 2 months and I’m still feeling good.
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Shanagirl,
I'm stage 3C, so not IV, so I don't want to offend anyone by posting, but have you tried the multi-symptom Imodium? It helps with the cramping. IMODIUM® Multi-Symptom Relief is the only OTC anti-diarrheal tablet that relieves diarrhea along with the symptoms of gas, bloating, cramps and pressure. I've been on Verzenio for 21 months and it's made it almost tolerable for me. I still get fatigue, but not all of the other symptoms. If you haven't tried it yet, please get some and see if it helps you. Hugs.
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Wondering if anyone has tried Verzenio after Xeloda? We are not sure if I am still responding to hormone treatments. Looking for my next treatment as liver mets doubled since my last scan 8 weeks ago. Still waiting for my Guardiant 360 results
It is so hard to wait when I know the Xeloda is not working anymore.
Thank you for your thoughts!
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My wife did palbociclib and then verzenio after xeloda. However in her case, the xeloda hadn't failed to work at the time of the switch. She got over 5 years on palbo and then verzenio.
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Today I’m wondering if I should just go back off Verzenio or at least decrease the dosage to 150mg once a day. I really feel the sheer exhaustion and weakness is so overwhelming. The D issues are also unreal interfering with being able to go anywhere and feel comfortable. Even though l,m stable, l feel my quality of life is not worth it. Has anyone gone off Verzenio and just stayed on Faslodex and Xgeva monthly injections?
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