I was recently taken off of Xeloda after 3 cycles due to progression. Still bone mets but there might be something in my lung that can't be confirmed if its a tumor or scar tissue.
My primary Onc wants me to go on IV chemo Vinorelbine because all other target drugs have failed. However, my second opinion onc from Dana Farber recommends Verzenio because I did well with Ibrance (no noticeable side effects and got 19 months out of it). He says I can go onto Vinorelbine if Verzenio doesn't work.
Has anyone gone on Verzenio after progression on Ibrance and if so, how did you do?
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Jonesburger
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Hi,Unfortunately I cannot answer the question. However, my situation is similar. I got 12 months of Ibrance (+faslodex) before next progression. Now wondering whether makes sense switching to verzenios.
Would be happy to read if someone has that experience.
I'm not at that point yet but my onc has said that Verzenio is an option once Ibrance stops working. Even though they are the same class of drug they work a little differently. My AI currently is Letrozole and I would also switch to fulvestrant along with Verzenio.
I had a 2+ year run with Ibrance and Exemestane with very few problems until progression of bone mets. Started Fulvestrant about 6 months ago and added Verzenio 100 shortly after. Too many issues with diarrhea so d/c for a month and just added Verzenio 50 a few weeks ago. So far tolerating that dosage much better.
My doc at Medstar Georgetown Lombardi has wanted me on Verzenio instead of Ibrance but then I had horrible ascites after my fourth day of vaccine! I blew up like I was 12 months pregnant. It was really bad as I could not function without help doing anything! I could not put on my socks or get up without help. I tolerated that for a month in March to early April. I went through my first round of Taxol and then I was drained--the easiest and best thing I have ever had done! The fluid has not come back after 7 weeks so that is great!! I felt great since then and the taxol was great except for that first 3 point session.
Thanks for that insight. Hopefully you’re right that diarrhea won’t last the whole duration that I’m on Verzenio. I don’t know which to dread more. The diarrhea or potential hair loss. I’ll manage either /both as long as this drug works.
Had the same experience - great results with Ibrance + Fulvestrant for 24 cycles, then slight progression. Oncologist took me off Ibrance for one cycle first, but had progression so she took me off Fulvestrant, too. I had been expecting Verzenio + Fulvestrant. Instead, since she concluded the Fulvestrant wasn't working, either, the next option was Verzenio and another AI. She recommended doing a clinical trial of an oral SERD as a better option; the progression is so slow, she said we have time to experiment with something that might not work, but would be easier to take than Verzenio. I was worried about the diarrhea because I had a bad bout for 11 days, for no reason we could tell. She dismissed that concern; take anti-diarrheal. I was okay with the 5 pounds I lost during the 11 days, but not okay with being stuck at home, unable to leave proximity to my bathroom, for half the day.
Wow so sorry to hear about your 11 days of diarrhea. That sounds awful. I hated it with one day let alone 11 days. I can see why they’re holding back Verzenio. Good luck with your next treatment and/or trial.
No, I wasn't on anything new; same Ibrance and Fulvestrant then, and hadn't had that response to that combo for 2 years. Must have been something else. It is so hard to know what is cancer, what is side effect (of which med), and what just happens as it would to anyone.
Has anybody taken Kisqali? My onco has been pushing Verzenio which really scares me w/ its side effects that appear worse than many other drugs, plus the potential permanent damage to lungs, heart & liver it could cause. I've put off taking Verzenio for 6 months since January but I've been getting fulvestrant injections all this time. I want to start something & have been asking her for other options all this time. Finally last week out of unnecessary frustration w/ me she said to take Kisqali. I already took Ibrance & exemestane for 3 years then had progression last year. Kisqali or Verzenio, I need to hear from you who are or have taken them please?!
Hi I took Kisqali for 4 months.sorry this is a late reply but I’m fairly new to the site and I’ve only just seen this.
It was my first treatment since diagnoses. I took it together with Femara and Zoladex implant.
I experienced some hair thinning and I have also developed a lot of sun spots( skin discolouration patches)…but I’m not sure if that was caused by the induced menopause and taking the hormone therapy to do so.
I felt ok on Kisqali but it affected my liver enzymes and at one point they rose to 10x above normal. I had previously had thyroid issues and one endocrinologist thought I might have a fatty liver and recommended I try to lose some weight.
Having lost weight, improved diet and increased water consumption I got the enzymes down and am now taking Ibrance instead. So far all blood tests have been good with the new meds.
hi I took 600 Kisquali and felt great!!! But my liver enzymes went sky high and had to be taken off. Went to lower dose but still had elevated liver enzymes. But NONE of the described yuk side effects.
Hello, So quickly. MBC - De novo, Breast, Liver, Spine
I am currenlty on Verzenio/Flavestrant and the primary side effect is diarrhea. Been on since 5-11-21. I had success with Ibrance for about 3 years, tried Afinator with no success....and requested to try Verzenio so here to good scan August. Next in the Q for me is Xeloda.
Thanks Lisa. You’re so lucky to have gotten 3 years of Ibrance. I hope Verzenio works for both of us. I’m on my 4th week and have had 3 bouts of diarrhea so far and they were all this week so I hope this doesn’t mean I’ll be having more diarrhea as I continue with Verzenio. But the diarrhea was manageable and am happy that I didn’t have any other side effects (other than hair thinning). Xeloda failed me so IV chemo will be next after Verzenio. Crossing fingers for good scans for both of us.
I am on Verzenio and Tamoxifen. I now take the lowest dose of Tamoxifen, 10mgs. once a day, because studies have shown it works as well at 5mgs as at 20mgs. They don't make 5mgs pills so instead of two 5mgs. per day, I take 10mgs. once a day. Also, as soon as I developed diarrhea I dropped to the lowest dose of Verzeniio. 100mgs. twice a day. Solved the problem of diarrhea and no hair loss. Only occasional diarrhea and I take Immodium. Works right away. I have been on this for 3 months now and have just had scans done. Get the results tomorrow. Hope it is working. I feel very good. Ibrance and Xeloda didn't work for me. Hope this helps. IV chemo is then the next option.
Hope you don't mind my butting in here but your post is intriguing...
So you were on Ibrance, then Xeloda--which I remember from your other posts was intolerable, then cycled back to Verzenio rather than move on to IV chemo or Affintor? Why did your doctor suggest this? Has she seen other patients have success with this?
My doctor mumbled something about Verzenio post Ibrance (which recently failed for me)... I just started Xeloda, but am waiting on a trial for an oral SERD. If that doesn't happen, I want options and ideas up both sleeves.
Cycling through CDK 4/6 isn't standard of care, but I keep hearing mumbles that doctors are trying it anyway... My Onc says they all work slightly differently (which would explain the different side effects) He also said he feels Verzenio is the best. I guess Ibrance was first to market, and Pfizer a marketing powerhouse so it gets the most attention...
Anyway, I repeat how I hope your scans went well. xxP
No I don't mind you butting in. Always welcome. We need lots of help from each other on this forum. I have my cat scan this afternoon and then see my oncologist tomorrow to get the results of everything. Got my fingers crossed. I was offered Exemestrane and something else with it. (Can't remember.) I was wary of this combo because of side effects. He didn't suggest Verzenio, he was saying the next option was IV Chemo which I am not sure I want to pursue at my age of 81. It was one of my daughters who asked about Verzenio and he said yes and he would apply for compassionate payment. I was accepted.Thanks heavens my two daughters, who occasionally do a conference call at appointments asked about it. I had not heard of it and for some reason he was not offering it. I must ask him why. My one daughter is very good with research.
I have done very well on it so I hope it is working. I will post the results tomorrow.
I wasn't aware of that ruling but he didn't hesitate when my daughter mentioned it. I think you are right, my age probably played a part in getting the second approval. Yes tomorrow I get the results of the bone scan, abdominal ultra sound, (tamoxifen and uterus wall thickening). cat scan and blood work. I will post when I get home.
Thanks so much. Much appreciated. I am fortunate to have the support of family and friends here as well. Gives me a great feeling. Wishing you well also.
I am currently taking Tamoxifin and Verzenio after Letrozole and Ibrance. I just recently had a scan and all is stable, in addition my tumor markers have trended down dramatically. I’m also feeling better than I have in quite some time.
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