Ibrance (Palbociclib)
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@Irishlove, I am so very sorry you have MS and MBC. I am sure the hearing loss and tinnitus impacts your balance. My father has nerve damage hearing loss which is hard to correct with hearing aids. However, there is some app or program that works with his iphone and hearing aid. This has helped him immensely with phone conversations and some audiobooks.
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So I got my labs back.and my white count went up.so I can start Ibrance again after 2 weeks. I thought it was interesting the my red cell numbers went down. Not a lot but some. I t will be interesting to see what the oncologist decides to do.
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Hi, everyone! I haven't been around in a while, since I switched to Verzenio in December, after some progression. I've now had more progression, and am looking at options, since the Verzenio isn't working for me. I got 5-1/2 years on Ibrance, and tolerated it really well, so was wondering if anyone had "circled back" to it after switching to something else?
Just trying to round up some possibilities to present to my oncologist, since her suggestion is Piqray, and I really don't want to do that…
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@ Ciaci- I watched a really good recap from early 2023 of a breast oncologist at Dana Farber outlining choices after cdk 46 treatment.
like a lot of YouTube's it opens with an ad or 2. Hope this helps . She specifically talks about piqray and an alternative from what I remember. She also talks about patients who do well for years (like you !) on cdk/46's and next steps. Let us know what you decide. I'm sorry you have progression.
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@ciaci im sorry to hear about your progression. I’ve been on Kisqali for 11 months, recent scan shows progression to bone only, my MO recommended to switch to Xeloda or Piqray, I don’t really want to that either. I’m thinking of trying another CDK4/6 like Ibrance if possible. May I ask what was your situation when you switch from Ibrance to Verzenio?
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anx789, I was put on Ibrance/Letrozole after a de novo diagnosis of a single bone met on my spine (my primary tumor was removed before Stage 4 diagnosis). At the 6-month mark, I was NEAD, and continued that way for 5 more years. Then a PET showed activity at the same spot on my spine, so oncologist switched me to Verzenio (keeping the Letrozole). She said 5-1/2 years on Ibrance was really good, but once she sees progression, she moves.
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aprilgirl1, lots of great info there - thanks! I will definitely be looking at my Guardant results closely…
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Ciaci-I wonder if it would be worth going on Xeloda for a while and then going back CDK4/6 after progression on Xeloda?
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April-Thanks for posting the video. It's very helpful.
Ciaci-Scratch the Xeloda suggestion. Now it sounds like Versenio or Elecestrant would be better for now.
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@ciaci have you done tissue/ liquid biopsy yet? I am a bit surprised your MO switched the CDK inhibitors, usually next line is fulvestrant without changing CDK if there is no changes in the status of the cancer. I refer to our late Pat, she cycled back to Ibrance a couple of times and I am pretty sure I have read some posts here from those who did that as well. please report back, good luck.
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Hi all. I am relatively new, diagnosed de Novo in Feb/March this year at age 45. I have one met to pelvis.. Initially I was on kisqali/letrozole/Lupron combo though I only ever managed one actual full month on kisqali since April due to elevated liver enzymes. A week ago I started again at the lowest dose and liver enzymes shot up again so now I'm getting switched to ibrance. I'm sad that the kisqali didn't work but wondering to hear about anyone's experiences. My first set of scans did show improvement, when essentially I was on mostly just hormone therapy for the past six months..I am also likely going to be getting radiation to my bone met.
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Sno-Drop-I think the video that Aprilgirl posted above addressed research with staying on Ibrance with a new AI and found it wasn't effective. I should watch it again and take notes, but that was my impression. It seemed to recommend switching to Fulvestrant with Versenio? I do remember Pat circling back to Ibrance a few times.
Lacorneille-I have found Ibrance very easy to tolerate and it has worked for almost 7 years for me. I had numerous bone mets when I started as well as pleural effusion. I think the fact that just hormone therapy has worked for you for six months is a good sign that Ibrance will also work. Good luck!
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Lacorneille17. I have been on Ibrance for 9 months. I am now NEAD. I only had one met and it is gone. I have few issues. I am having issues with my neutrophils count dropping to low and some fatigue but otherwise I am doing well. I hope you have the same success as chicagoan.
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Lacorneille17, I had a similar experience with Kisqali last year. After 3 cycles, my liver enzymes became elevated and continued to skyrocket even after I stopped taking it. I ended up in the hospital as a result. I was so disappointed about not being able to tolerate it and really scared about what happened to me. Once my liver calmed down, I started on Ibrance. So far, it has been a much easier drug. I did have slightly elevated ALT in the beginning with Ibrance that caused breaks to ease my fears, but things did eventually settle into a normal range. I hope Ibrance works really well for you and that it’s easy to tolerate.
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Oh is this where all the cool kids are? :P
Ciaci - is radiating that one spot not an option if that the only hot spot on Verzenio? Or are there other changes afoot like fast rising tumor markers or whatever? I suppose that liquid biopsy will help tell a better tale and hopefully keep you off Piqray, or at least until that newer version comes along.
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I've been off Ibrance since July due to swallowing issues. I'll see my MO next Wednesday. Blood work this week was pretty much OK. I have no idea what she'll recommend. Some of the other options weren't good options for me.
The Ibrance pill is too much for me to swallow. I had another procedure/test yesterday called an esophageal motility test. Not fun, but not as bad as I thought it might be. Nurse had to bring in two doctors because the tube thing wasn't going down like it should. Great nurse, though, and I really liked her. I'll ask for her again if, God forbid, I should ever need this test again.
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Sunshine99 glad things are holding steady with your labs. Nothing worse then a test that won't cooperate. Hope they soon figure out whatbis going on.
I have decided that fall allergies and ibrance are not a good mix.
Learned today my MO is ill and not returning to my hospital. This month I get to see a PA. I didn't think I would have to make a decision about a new doctor and possibly a new facility until December. I am also dealing with my husband who had a sudden hearing loss this weekend in his one ear. Does this stuff ever end?
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brutersmom, that sucks! "That" being you needing an new MO and your DH's sudden hearing loss. Sorry you're dealing with allergies, too.
I'll see my MO via video visit on Wednesday. I didn't see the point of coming into the clinic if I don't have an infusion. I have no idea what our next step will be. My throat feels better today, after five days. I actually ate a lot last night for dinner, and DH commented on it. He also commented on how far I walked with the kids yesterday. Sometimes, I don't know until later how worried he was about me.
It's nice to have only one more appointment this month, and then nothing until November 8 when I have my endoscopy procedure. I really would like some answers…
Carol
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Thanks Sunshine99. It has been a journey from the beginning. I hope you get some answers soon. I am glad you are doing better and we're able to get out. Food is good to. Gives you more strength and energy. Good luck with your tellemed visit.
I spent yesterday on Google searching for alternative cancer centers within reasonable driving distance and found 2. I have an appointment Thursday with the a PA. I will know what I need to do after that. I feel better having narrowed it down to 2. Both are part of large well known cancer centers. So the decision will be which one is affiliated with the better hospital.
I did learn something interesting is my current cancer center is not affiliated with and know cancer hospital. My MO was not employed by Tower Health. That may be motivation to move on.
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Today I saw the PA for my followup because my oncologist left due to illness. He was great. I am set up with a new Dr. and the ways she describes him he should be a good fit for me. She suggested I follow up in 3 months since I am now NED. I also asked about scans and was told that they only do scans when symptoms show or since my ca27.29 followed my cancers response to my meds svans would be done when that changes. I only had one met when it was found and as far as I know it is still that way. I am actually seeing a new oncologist in about 5 weeks. I want to have knee replacement surgery in February and I wanted to make sure he was in agreement and will sign off. Just hoping my orthopedic will agree to it. This all seems like positive news but I still feel anxious.
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Brutersmom-that sounds like really good news! Hope that you can finally get your knee replacement.
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Chicagoan, I am both excited and scared. I don't want another dissapointment. Right now I have so many thoughts running through my mind. I feel like I get answers to one question only to have 6 more. When I have some time I will organize them and post them here for comments. I find sharing things helps sort out what is important, what I am overthinking, and what is unknown or incorrect thinking.
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brutersmom, your comment made perfect sense to me. Sometimes, positive news makes us feel anxious. I mean, what if ??? My MO offered to space out my scans beyond every three months. I told her I found comfort in getting them every three months just so I don't worry about the "what ifs?" Cancer feels like a whack-a-mole game most of the time.
I'm still off Ibrance. I'll see my MO in six weeks (end of November) and will have my scans the day before. I have my endoscopy on November 8, so hopefully we can get a handle on my swallowing issues. If I continue to have "stuff" show up in my lungs on the CT scan, the pulmonologist is going to insist on a pulmonary lavage. At least I'll be moderately out for that test.
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Brutersmom, great that your scans are NED. Keep us posted on your new oncologist and knee surgery . I'm with Sunshine99 - was offered to have scans every six months since things are stable / nead . However, I want to know if something is brewing . Last couple of scans have been 4 months apart and that seems ok for me right now .
Sunshine99, I sure hope you get some info and treatment for your swallowing issues. I know that has been frustrating and scary .
SondraF- how's it going ?
Ciaci - how's it going ?
hope every one has a good and relaxing weekend !
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Aprilgirl1. My ca27.29 dropped steadily after I started on ibrance and letrozole. In July it went into the normal range. I had the scan at about 7 months mostly because I went on vacation when he wanted it done. Maybe my clinic seems to be wanting to expand things out. Apparently this has to do with the fact that I only had 1 tumor when my mets were discovered and it responded very quickly to the meds. But both the PA and my last oncologist said I would only have scans if my ca27.29 goes up or if I have symptoms. I don't know if this has to do with being NED versus Stable and only having one small spot of cancer. I feel confused about this.
As for the knee I am preparing an email to the orthopedic office. I want to make sure I know what I need to do before the last minute.
Sunshine99 being off meds is also unnerving. I hope they figure something out soon. I am assuming that aromatase inhibitors are holding things stable for you right now.
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@brutersmom , maybe it's due to one met however relying on symptoms or ca27.29 marker increases to order pet scans or Ctscans does not seem like standard of care . Most oncologists in the US scan MBC patients every 3-6 months (depending on stability and of course symptoms ). My tumor markers are never elevated, even when I had untreated MBC . I would be confused by this protocol, too .
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Hi all,
Yipeeee!! I'm finally able to access this group!! I just have trouble remembering how to get it. I have a mental block when it comes to all things IT, despite using it gor work and communication for decades. And then theres age and Chemobrain.... LOL!! The struggles we have jn life eh 🤣.
This is Rose Ochwada in Nairobi, Kenya, from the Monday discussion group. MBC with liver Mets since and on Ibrance/Palbociclib and Femara/Arimidex since December.
My treatment has had its ups and downs, mostly coz I'm Asthmatic and have hyperacidity and arthritis so Ibrance knocks my lungs and Femara hits my joints, on top of the usual fatigue. But all in all, my other body parts are tolerating the treatment so I've come to compromise to soldier on seeing as this regime is keeping progression at bay. I've had occasionally worries over my Bloodworks, kidney function and once, my liver enzymes. But I'm reluctant yo change treatment as long as progression is not happening. So onwards and forwards.
I love, love, love the discussion groups and the Monday meetings. It's the absolute best thing that's happened to me since diagnosis. You ladies are the warmest most informed and honest people I've ever met in my life.
More later ❤💕🤗🫂
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Welcome back. Sorry you are here but glad you are. I was diagnosed with mets to the pleura of my lung in early January. I am doing well but always have lots of questions. My favorite past time is lifting weights and exercising with a group of ladies and a coach. They keep me going strong. Feel free to share, comment and ask questions. We are here for you. Glenda
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Welcome Rose! Hope that Ibrance/Letrozole works well for you.
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brutersmom, another question for you. I'll be staying off the Ibrance until at least my next endoscopy procedure. I have scans on 11/28 and then see my MO on the 29th. The pulmonologist said that if my CT scan continues to show stuff (my words) he's going to "insist" on further testing and will probably do a pulmonary lavage.
Have you had that procedure? I'm not worried about the actual test, as I'll be sedated, but I'm just curious to know if any of your issues were found that way. My coughing is much better, but the groundglass and tree-in-bud opacities are still there.
Carol
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