Ibrance (Palbociclib)
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After the second surgery almost 3 years ago, MO bluntly told me I was stage 4. And there would be scans. I had no idea how frequently didn’t know enough to ask. Turns out, yearly. Even though I had a nuclear scan in the fall, my yearly ct is scheduled for next Monday.
So I guess for me, yearly it will be, unless I have symptoms somewhere.
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RK2020 and others...thank you for the sharing your experieces and tips on receiving Fulvestrant. It doesn't sound pleasant but tolerable. I'm most concerned about the possibility of joint i.e. arthritis pain as a side effect. I walk outside 30 minutes most every day, even in winter, and go to gym for weights couple times/week. Would not want joint pain to affect my mobilty and activity level.
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WhenInWI - I continued to do Zumba when on Fulvestrant. I think that made me feel better. I didn’t stop Zumba until the mets made me do it.
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Sondra, if I haven't said it, I'm so sorry for your progression. Hope the new med can kick it back again.
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Thanks everyone!
I think overall I am just peeved about having an ok run and it over the pandemic. I was hoping for another 6 months at the least, to give me a chance to enjoy things as everything moves into the post-pandemic world. On the plus side its still contained to bones, and its just that one vertebrae and I no longer have to take letrozole and the timing worked out as it oddly seems to do. Hoping this is the one to give me a long run, or at least as equal to palbo. Lots of things I want to do yet!
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SF-Cakes- after every 3 months- then every 4 months, then my MO felt that my TMs were very predictive of how I was doing and went to 9 months- she did ask me what I preferred and I really enjoyed stretching them out- we are now every 4 months (two treatments later) since my TMs are starting to rise. I do think the "art" of medicine and each MO and patient's tolerance for uncertainty plays a role in the decision,
MaleBreastCa- usually they like to change to a different category of hormonal than the one that failed you- interesting that they chose Fulvestrant after you failed Tamoxifen. I failed an AI after 4.5 years so I did the Palbociclib with Fulvestrant. there is some thought that if it has been 2 years since you took it you could retry it. I thought that the fulvestrant was more tolerable than an AI in joints - but, as you probably read everyone is different. I do really think Yoga has helped with the joints and overall feeling good- it is zoom right now with my regular teacher.
SondraF- thinking of you
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Hi All -
KBL - thankful that you listen to your body, it is so scary that scans don't really pick up your ILC cancer and the reality that it was there for so long with no treatment is just shocking to me.
SondraF - good news that they caught this quickly but sorry to see you leave Ibrance, definitely keep in touch! Candy-678 is doing well on Lynparza.
RK2020- I heard it was cold in florida, not ok! Hopefully it will warm up soon.
MaleBreastC - welcome to our Ibrance group, sorry you have joined us
I was dx stage IV 11/2019 11 years from stage 1 node negative IDC (surgery, chemo, rads, 6.5 years of femara). I have found Ibrance and Fulvestrant pretty easy to tolerate with the exception of low white blood cell counts quite a few times which led to 2 dose reductions. I have been on 75 mg of Ibrance for a year now. I have quarterly pet/ct scans and they were NEAD after the 2nd or 3rd scan (I will have to look back) and have stayed NEAD since (fingers crossed this continues for a long time). I was taken off femara after 6.5 years as I was told my risk of breast cancer recurrence was very low and my risk of osteoporosis was a greater threat.....HA.... I work full time, my joint pain is less on fulvestrant compared to femara and overall I feel pretty good. I have lost about 30% of my hair, but my hair was really thick so it's not that noticeable. I probably have some fatigue but it's hard to say. Initially, when I got my stage IV dx I did not feel good and the cancer in distant lymph nodes were pressing on my windpipe and also paralyzed my laryngeal nerve which made me lose my voice. Fortunately the "laryngitis " went away in April of 2020 so 6 months after starting Ibrance/fulvestrant - even though the Otolaryngologist I saw in January of 2020 told me that the nerve was permanently damaged in his opinion and would not "come back". This time I was happy to prove a doctor wrong;) Honestly, the pressure on my wind pipe had become so bad that I had to sleep sitting up - this stopped after the second fulvestrant injection which gave me a lot of hope that the tx was working.
We are here to help you so ask any questions you may have! Some of the Ibrancers have serious gas. I have not experienced that but I do have the occasional constipation which miralax for a couple of days clear up. I found that every cycle is a bit different and I had more constipation on the original dose of 150mg.
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Sondra, sorry to hear of your progression. Did I read your post right, you only had one met that progressed? Can't they treat that with rads and keep you on I\L longer?
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Sondra, so sorry about your progression. Lynparza was fantastic for me... gave me 20 good solid months before my dumb cancer cells found a way around it. Maybe I will be able to go back on a parp in the future.
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Simone - I had local primary/node progression before this, in my October scans, which prompted the surgery. So MO/nurse and myself were ALL disappointed that this asshole met decided to not play ball this month. MO is concerned that given the two events the cancer is "on the move"; L4 is the last blob of cancer, my L3/L5 and sacrum are all fairly small and contained. So a combo of a quick zap to L4 and a drug change at this time arguably makes sense compared to just a zap 'n hope. There is also the added complication of awaiting breast rads that I would have to come off Ibrance for a few weeks for that anyway. But, I have no pain which is a good thing and frankly I was a bit surprised to see that met had grown.
I first flagged increased node pain in July so really, Ibrance hasn't been holding everything entirely stable for some time. Its supposed to be such a wonder drug (and 2 years is still a decent run!) that when you just achieve the median (or less) you feel kinda down when you dont get some awesome response. Total C+ job here, so I am actually kinda looking forward to trying something new and different.
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Sondra, wow I have really missed a lot of posts. I didn't realize you had a previous progression on ibrance. I wish you the best in your next line.
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Sondra F sorry to hear about your progression. I hope the next RX gives you a longer run! Take care and please visit here as often as you can.
Tany
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just wondering if anyone in the group is on Ibrance for longer than 2 to 3 years ? How long does it work ..
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MaleBreastC- we do have a few people that post on here that have been on Ibrance for 4.5 or 5 years . One is Ciaci . My oncologist has patients who have been on Ibrance for 6 or 7 years , they may have been on one of the trials .
My oncologist assured me that if and when I need to move on there are many other options. However, I know how terrified I was when I was waiting to see if Ibrance - fulvestrant was working. It is still terrifying at times but I try to take it one scan at a time
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Ciaci - I'm just checking on you , in your pocket for your scans today until you get results !
Pocket duty available for anyone else with scans or appts coming up
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Thanks, makes me feel good, the first 2 cycles for me have been quite tolerable, my first scan is after 3 months meaning next month..
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Hi MaleBC. I have extensive bone mets and have been on I/L for 5.5 years. It is my 1st line of treatment in the metastatic setting. Like you my original Dx was 2004. I do hope that you get a long run on I/F
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Yes, Ciaci, sending you positive thoughts for your scan results, hope the scan itself went okay for you today.
SondraF, also thinking of you, starting the Lynparza Lindy soon (perhaps you've already started). I really hope this treatment works fabulously for you, with extremely small side effects, please.
Thanks to everyone weighing in about length of time between scans, it's interesting how it varies. I'm going to talk with my MO about it. It's not like I WANT to scan sooner, just, you know, kind of anxious. Lol, whaaaat? Anxious with MBC?? Who'd've thunk.
MaleBreastC, welcome to this thread. My main side effects are fatigue and gas. One is frustrating and the other is hilarious. I'm on cycle 12 of ibrance and overall feel pretty good, have less energy in general but still able to work, take care of the house, garden, etc. I know that isn't true for everyone with MBC, and I know at some point it won't be true for me either. I try to be grateful, which works most of the time.
Waving hello to everyone else, so good to "see" you all!
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Hi, all! I don't have my results yet (will get them at 10 AM when I see doc), but wanted to pop in with a little info, while waiting for my good news (a little projection can't hurt, right?)
I've been on Ibrance since Aug 1, 2017, so a little over 4-1/2 years. Today I started cycle 60. Oncologist did first follow-up scan after 6 months, and it was clear, so got a "No Evidence of Active Disease" designation then. Since then, I've scanned every 6 months or so. Assuming yesterday's went well, in August, when it'll be 5 years on Ibrance, she wants to move to yearly scans, if it doesn't freak me out too much. I think I'll be just fine with it. My doc also mentioned that at the 5-year mark, we could consider discontinuing the Ibrance. Okay, THAT freaks me out. I'm very much a "if it ain't broke, don't fix it" kind of person... if possible, I'd probably keep going as long as they let me!
I have virtually no side effects from the Ibrance or Letrozole at this point - I get tired some afternoons, so I nap or go to bed early, but that's it! (I've been very, very, lucky, I know). I take fitness classes a few times a week, and I'm sure that's helping.
Off to get dressed... I'm wearing my cargo pants so you all can fit in the pockets!! Will check back in when I have my results.
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Ciaci - interesting re dropping Ibrance after 5 years. I scanned last week and was stable. I have ct and mri every 6 months so 4 scans a year. My Onc is happy for me to scan less so I will be very interested to learn about your good scan🤞🤞🤞 and what you decide to do going forward.
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MaleBC-I have been on Ibrance/Letrozole almost 5 1/2 years. When I started I had extensive bone mets and pleural effusion. This is my first cancer treatment.
Chico and Ciaci-My MO has never mentioned dropping Ibrance-I think possibly b/c I had so much cancer when I started. I have never been NEAD but I'll take stable. I'll be interested in following what you two are doing. I'd be a little afraid of stopping Ibrance but I guess I could always go back to it. But she has never suggested it and I don't mind taking it at all.
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Aprilgirl1, yes, we must listen to our bodies. The sad part is when I was having trouble eating the first time, it was October of ‘18. Didn’t think it was a horrible emergency and waited until April to have the endoscopy and didn’t start treatment until June if ‘19. This lasts time I had trouble and was losing weight, it was about a month before I told them we needed to switch. I’m much faster now, knowing when I start losing weight, there’s a problem.
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MaleBC- my main SE's are fatigue and gas , just like the others said. Sometimes this leads to extra BMs. The gas can be a little .. inconvenient but my husband and I sometimes have a good laugh at what comes out. Sometimes the gas is uncomfy. I have other issues going on so I know a lot of anything else that goes on is likely related to that ( I have ascites and hope one day it'll dry up). After my third cycle (currently on my 4th) I got the NEAD . No one was expecting it so it was quite a happy and welcome surprise. Hoping to get longevity out of I + F . Fingers crossed. Hoping all goes well for you .
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BAP- Happy to know that you are NEAD after 4 cycles, I am on my 2nd now. I have no symptoms and my blood work is all normal, not sure if this suggests anything positive, also mets after 17 years which is rare, hoping that these signs indicate that it will respond reasonably well to the tre
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I'm on cycle 22. I started at 125 mg, but dropped to 100 mg after 4 cycles of really low ANC (absolute neutrophil count). I'm still low on the ANC count, but not as low as when I was taking 25 mg.
Fatigue is an issue, but who knows if that's the Ibrance that is causing it? I nap every day - sometimes twice.
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My morning nap is a leftover from working split shift, getting up at 0 dark hundred. If I don’t have an appointment, I usually have a pm nap. My brain tells me I “should “ dust, clean something. I tell it to shut up and zone out. Naps are a good thing.
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Chicagoan, Chico and Ciaci - love to hear the 4 plus years good news re Ibrance ! (ps - almost said positive but I have to tell y'all, positive has a WHOLE new meaning to me now!).
Update on ibrance packaging - wouldn't you know it, this week my Ibrance came in a clear plastic ziplock, not the clear/yellow HAZARD chemo bag that I am collecting to make my cinderella "trashion" ballgown. I will ask accredo about this next time I order! I may have enough of the yellow for a bodice but I really envisioned the entire gown made out of the bags.
I will start cycle 27 tonight (waiting for my blood test results). I had my appt at the closer clinic today and it is so nice, blood test and injection done in less than 30 minutes.
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All this info makes me feel hopeful. The ibrance info and also the positive info from next lines that are mentioned.
I will be very sad if there isn't a Cinderella dress in the future. I am looking forward to that picture!
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Hi friends, I am catching up on some discussions and it's nice having this group to chat with, though I may not be on here all the time.
I got my 3rd loading dose of fulvestrant today, and it's making my hips achey and sore. I will start Ibrance either tonight or tomorrow morning. When do you all take it, and does it seem to make a difference? I thought I'd take it in the morning like I used to with tamoxifen and anastrozole, but MO suggested if I experience nausea then I can take it at night. Maybe that's better? Do you take it with food or no?
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Aprilgirl, so glad you can have those appointments at the clinic close to your home, that's great. And, lol, of course they didn't give you the cool hazard bag this time! Don't they know you have a ballgown to make? Cycle 27, hurrah!
Lol, Spookiesmom, yes, tell that brain to shush if it's trying to say you should dust!
Cheka, I take my ibrance at night, 8pm, with a small glass of milk, sometimes a little yogurt, and I've never had nausea from it.
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