Ibrance (Palbociclib)
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Tanya,
thanks so much for this! This really helps me believe I can make a dent in my liver Mets. I also have a portal vein clot which we are trying to treat but it’s been hard with odd platelets. So hoping that ibrance does the cancer killing while not totally making my platelets too low0 -
SF-Cakes - CBD oil with a little THC does not make me sleepy at all so I take mine late morning or early afternoon.
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Ciaci - I love your posts; very happy to hear that you are doing well. I really hope to relocate sometime in the near future - like in a year (or less) so that is a great idea about just traveling back to your regular doctor for check ups. That's a great option to consider.
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BAP-I've been on Ibrance for 5 years now-I'm on my 65th cycle at 125. I had numerous mets and pleural effusion when I started. The mets healed and the effusion dried up. Initially I had a lot of fatigue from Ibrance-I used to need naps the first 3 months. Now I think my main side effects are from the letrozole. I do have joint stiffness-the xrays show that it is arthritis. But I am able to stay very active-I think my joint pain may be from really overdoing pickleball-playing 6 days a week for 2-3 hours a day was probably not a great idea! I was quite weak when I started due to the effects of cancer. I regained strength by walking every day. At first I needed to use trekking poles and to sit down every few blocks. Now I can walk for several hours, albeit at a slow pace compared to normal people. I still use the trekking poles if I feel stiff or want to walk a long distance. They really help so you might want to get a set-they aren't too expensive. But all in all, Ibrance has been a great drug for me and I hope I can stay on it for a long time. Also, you might want to try just walking or exercising in a pool. I found that helpful when I was shaky and weak. I didn't have to worry about falling. I hope that Ibrance works well for you and other newcomers-sorry I don't remember everyone's name but welcome to the dance!
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Thanks Chicagoan ,
I’m trying to get up and move as much as I can after my long hospital stay. I was a very active person prior to my admisssion and complications. After abraxane I had a great response so they just put me back on tamoxifen. Then a few weeks later my liver enzymes started to go up and they wouldn’t investigate saying my ct was clear. Then finally I went to the ER and my mri showed hepatotoxicity but no cancer (so they thought). At that time I was getting ascites. During my liver biopsy they noticed my portal vein was clotted. So I was admitted and almost died. Told chemo was off the table. I finally convinced them to let me try ibrance and fluvestrant since I have been a good responder in the past.
So it’s great to hear about your response! And that your effusion dried up. I’m waiting for the day my ascites dry up but for now , I drain myself for comfort. it’s also comforting to know that there’s a few of us here starting with lots of Mets that it’s working for. I was under the impression that chemo was the only thing for many Mets.
Hoping after a while I can get back to my walks and exercise . I have to be patient but it’s hard when I’m so used to being go go. I’m so glad to see that you’ve improved so much that you were able to exercise without your walking sticks
Thanks for replying !
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Chicagoan - I love your story! Go girl go. I hope one day we can all find the right drug to beat the crap out of this beast. ❤️
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Chicagoan, Tanya and all - love to hear these facts of long term successful Ibrance!
BAP , sending you tons of love and energy that the Fulvestrant/Ibrance kicks your cancer BIG and gets it stable and then gone. ASAP. I did not have wide spread mets but numerous lymph nodes in my chest/neck full of cancer. Too many to count per my MO. After the first injection of Fulvestrant I swear I felt some relief within 3 days from the pressure on my wind pipe (from swollen lymph nodes) and I could comfortably lie down to sleep vs sleeping propped up. First scan after 3 months of I/F showed significant shrinkage and the next scan, more shrinkage and many were "resolved". At 6 months of I/F my voice came back (had lost my voice due to lymph node pressure paralyzing my left vocal cord. FYI - ENT told me early on that the paralysis was most likely permanent) 3rd scan was NEAD and I am still there. Starting cycle 23 on monday. I had 2 dose reductions and am on 75mg.
I think Ibrance and Fulvestrant or letrozole can be a miracle combo.
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April girl ! Thank you ! I don’t have wide spread Mets but many , same as you , too many to count in my liver. I think I’m due for a scan December but it won’t be three months from starting this combo. It will be about 8 weeks. So I hope they keep that in mind and not pull me off prematurely and not give it a chance to kick in. But I will discuss with them. This is very hopeful. I know it doesn’t work for everyone but I’ve been a great responder to both lines of treatments that I had before. So I’m hopeful !
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B-A-P, I have numerous mets to my skull, jaw, spine, ribs, and sacrum. I’m currently on my second cycle of ibrance and anastrozole. So far so good, I’m hoping to see improvement on my scan in December. There are so many different treatments now, we no longer have to just rely on standard chemo. I hope this treatment line works for you
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thank you Katyblu- hoping the best for your scans ! I think mine will be too early to tell by December but I’m hopeful!
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SF Cakes, I was looking for some comments on neuropathy with Ibrance and came across your post from July:
"Sigh. Now the fireworks bring on the waterworks. Good grief. I think a long nap later today is in order. Also, people who set off booming, window-frame-rattling fireworks at 2am are poopy pants doofuses"
That's PERFECT! "Poopy pants doofuses" I absolutely love that!
Carol
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KBL- The majority of people don't understand and I find the very very few who do that I run into have a serious cancer dx too. That's why I think the breast cancer awareness campaigns fail overall, because people are only aware but literally know nothing else.
Snowdrop - A tech was chatting with me once and I guess was amused how much I knew/experience I had etc with getting bloodwork done etc while prepping me for a scan. She said "Sounds like you could do this by yourself" - I said nah, it's hard to stick yourself with a needle, I hate needles. Usually the sticks that hurt are from techs either in a hurry, chatting too much while doing it, or really new/inexperienced/young. The infusion room nurses and for the most part scan techs who do the blood/ivs/infusions are the best with needles I've found. The others - nurses who come in to draw blood etc at DR appt are hits or miss. We do kinda become experts since we do this so much don't we?
Tinkerbell - I am the most regular during fall - lots of good roughage in the fall, roughage that tastes good too!
If I add a coffee with apple pie - Ibrance dam is broken! Hope you enjoyed the fall festival. Katyblu- glad second cycle is going well. Pretty soon you'll have several under your belt, amazing right?
Much better than chemo yes? Emotional stuff sucks tho. I wish that part was easier to deal with. Cakes - Peter Gabriel is one of my favorites. His 'So' and 'Us' albums mean a lot to me. I concur on the 'bring on the sedation!'. I used to think days were hardest to get through, but now it seems nights are the hardest. I sleep on my own, but it takes awhile to settle enough to do it at night. Sometimes I think, think of all you on here and get upset at struggles you all go through. Think of the future....is there a future? All kinds of stuff. I'm hoping the cherry juice helps. Maybe we need to try a multi prong approach at this. It took me a long time to find sleep again after DX, its not perfect but its much better than what it was. I could never nap before and now I can most days. The settling in a routine a bit helped a lot. Hoping sleep finds you soon! Love your new backyard friend
RK- how are things going with the other cdk4/6 wonder drug Verzenio? What you described is why I generally say "Hanging in there" and leaving it at that and limit conversations outside family who don't have cancer. I realize other people go through things too besides what I go through. But I just don't have patience much for bee sting whiners etc but I still knod and smile like I get it and move on as best I can, getting people is hard to understand unless unfortunately they learn themselves what its like.
Aprilgirl - I had forgotten your mets were effecting your voice etc. Wow. BAP's inquiry kinda reminded me where we all started from and all the support pouring toward BAP was such a good reminder how far we all have come. 75mg too. Good stuff, onward!!
Candy - thinking of you on Lymparza. You'be been through a lot over the last few months. I've noticed your quieter in posting here lately. Anything we can do to help? Cheer you up?
Sunshine- Cakes has a way with words I can really really appreciate
Gets right to the heart of the matter I haven't seen anyone take Ibrance with exemestane too yet - most seem to be taking it with Femara (letrozole).
Been feeling a bit funky lately, like I'm making a trek to head to funkytown. Have good fall plans this weekend that hopefully will help lift the mood. Scans coming up has sorta awoken that electrified nerve all over body feeling.Today was officially the last full mow of the season. Beloved mowed all except he left me a little patch in the backyard just for me
So *I* officially will be the last one to have mowed this season I wish I could drive a tractor and hook it to a big flatbed full of hay bales and drag ya'll with me to my scans. But, I have all the ingredients for Chili, I'm making skyline type chili to put over spaghetti with diced raw onions and shredded cheese. I'll happily enjoy chili onion breath when I come home from each scan And I'm picking me up a pumpkin roll the weekend before my first of the 2 scans too. I'll be ready for a virtual fireside laugh in with you guys Thankful to have all of you Love to you ladies
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Hi friends,
I’m new here. Just received a stage iv diagnosis with bone mets. I’m comforted and inspired and moved by your words. I wonder if anyone has any advice:
1. Did you have better luck taking ibrance in the am or pm (or maybe it made no difference)?
2. I’m scared reading all the literature/disclaimers. Do you wash hands before and after touching the pill? Do you wash your clothes (eg exercise clothes that you’ve sweated in) separately from everything else?
3. Anyone taking melatonin?
4. Anyone HR+/PR- who’s been on Ibrance for a while? 12+months? My oncologist was very dooms day and gave me very little hope that it would actually work for me…due to my hormonal switch from PR+ to PR-. Hard not to be discouraged and fearful, but I have been meditating and working on letting go of what I can’t control.
Thank you so much to the collective brain power of this group and all the compassionate voices. I hope all of you are hanging in there.
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LPG - I'm actually awake a bit later than usual. Busy mind. I'm so sorry you find yourself here with a very fresh dx of Stage IV. But you have come to a very supportive thread, we will help you get through the rough beginning part where your still figuring everything out, promise
1. It depends on which time of day it is easiest for you to remember and take at the same time consistently. Some take it in the AM because they say it helps they sleep better, sme take it in the evening with dinner because its more convenient to take. Effectiveness isn't dependent on which time of day, so when you want to take it is up to you
I take my AI pill its paired with at the same time I take Ibrance. I take mine with dinner. Taking with food I found prevents a bit of an upset tummy. 2. Yeah the literature can kinda be scary. But I've never washed my hands before or after taking it with the forethought "They want me to swallow this but wash my hands before and afterwards???" LOL. I wash my beloved and I's clothes together. I don't flush the toilet twice. I did do that with AC+T which I see you've done too. You will find Ibrance much tamer overall than that tough regimen you completed before. I honestly got better advise here on all things Ibrance rather than the literature, much less scary too.
3. I did take Melatonin a few times low dose. It did help with sleeping a bit but I did have some whacked out dreams kinda like Val Kilmer's character did in the movie Real Genius. That's common apparently with it, but it does help many people to sleep. Give it a whirl
4. I do know someone ER+ PR- on Ibrance 24+ months and currently still on it.
Ladies here are real knowledgeable and kind and I'm the resident goofball a lot of the time, welcome to the thread, look forward to getting to know you
Anntop, Lemon, you newbies doing ok?
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welcome LGP111 I take ibrance in late morning around 11. That’s just what works for me. I did wash my hands at first but quickly abandoned that through forgetfulness and then I realized it’s not that big of a deal. My first batches were in a pill bottle and I put them in a pill caddy which Pfizer provided. That was a lot of touching so I was more diligent. The pill packs now you pop out they’re individual.
Our bodies know how to heal. I do t like that the Dr is not giving you the encouraging talk. It is the beginning of this treatment.
Tany
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Rabbit!!!!! Skyline!! Really?????? My kind of gal. You must be around Cinti to know of it. I’m a transplant. We have a restaurant in Clearwater I can get my fix. Don’t forget the cocoa.
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yikes I didn’t realize that it wasn’t as effective in pr- but maybe it doesn’t mean anything at all. I’m also pr- but highly er+.
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Rabbit- Thanks for thinking of me. I am ok. Still on Lynparza-- 6 weeks now. Still nausea issues and fatigue. I see my MO Oct 25 and will get blood work and will see how my numbers are and talk with her about lowering the dose some. I want to stay on a dose that will work on the cancer. I have not seen data on the PFS if we lower the dose. So I hesitate on lowering it. But, I cannot keep the nausea up. I have lost weight. I eat because I have to, but do not find joy in it. No appetite. I read on here daily. I just do not have much to contribute right now.
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LGP, welcome to our wacky group. I'm about to start cycle 18 of Ibrance. My first cancer was WR+, PR+, but the Stage IV is ER+, PR-. I did have my dose lowered from 125 to 100 after four cycles because of neutropenia.
I take mine in the morning with my Arimidex. I recently started taking melatonin at night. I think it helps. I've always had weird dreams, so I haven't noticed any change with that.
I'm sorry your MO gave you gloomy prospects about the treatment working for you. Both my MO and the RO told me that this was not a death sentence. However, I've been know to pull the cancer card out - like the time a new dentist wanted to pull a tooth (big no-no with Zometa) and put a crown on another tooth that would last 25 years, or something like that. I told him I was terminally ill and that the super-duper 25 year crown would be a waste of money. Anyway, I digress...
Come hang out with us. There are lots of good threads on the Stage IV forum. Mel's Living Room, as we call it (My Husband, My Life, My Love, My Family, My Cancer) is a great one, if you haven't already discovered it. STEAM ROOM FOR ANGER is another good place to vent when you need to let loose.
Don't be a stranger,
Carol
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LGP111 - welcome and I am sorry you are here, but I am confident we can give you hope! I am not sure where your mets are but bone only and if there are only a few you might be able to do radiation to also help kill these cancer cells. I am sorry your Oncologist wasn't more encouraging. I understand second opinions take time and you are at a very overwhelming point in the stage IV tango, but think about a second opinion if you can take it on. I take my Ibrance at dinner because it's easiest for me. I also set an alarm on my iphone to help me remember. My oncologist really wants me to take it as close to the same time each day. When I did CMF I was careful about the toilet flushing etc but I am not as concerned with Ibrance.
CINCINNATI and Skyline Chili - I was born in Cincy and my father was born and raised there so I have a love of Skyline Chili and Graeters Ice Cream!
RRabbit - appreciate you sharing that you are having some funkytown feels - hope we can keep your spirits up. I was there last month. This is my week off of Ibrance and I feel less funky. (edited to add this!). Love that you had the final mow of the season. Hope the chili warmed your heart and soul.
Candy - good to see you post, sorry you have had nausea and hope your onc has some ideas for less side effects for lymparza while it works it's magic.
I am late to decorate for fall but have been baking! Here is pumpkin roll for a treat
I love my fall hydrangeas. They are bright blue in summer but fade to this green/blue/purple mix. 
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I can get both in Walmart here. No need to drive 1000 miles!!don’t ya feel sorry for those who never had graters
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Does anyone ever feel a little sick and fatigued on Faslodex? I just had my second dose, but I didn’t sleep well or eat well yesterday, so I’m wondering if it’s temporary because of the poor diet and sleep? After the first dose, I had no side effects.
I’m with my husband and we are staying with friends for the weekend. Going to a football game tonight so I need to feel better pronto.
Any tips?
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Did you take Claritin before your shot? If not, get on it asap and take it tomorrow and probably the next day as well. It should help some.
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Rabbit, I hear you. Ugh. So sorry you’re in funky town. I was there for a few weeks myself but have finally come out of it and have more energy.
Welcome LGP. I don’t take I dance any longer, but I never touched them or my Letrozole or now my Xeloda. I used to just push them out of the hole and put my mouth there and pop it in. With the Letrozole, I put it in the cap and titled my head back and dropped it in. With the Xeloda, I tap the three pills onto a paper towel and grab them with my mouth. Quirky, I know. I them still wash my hands. Never have washed my clothes separately. Took my pills after dinner.
GoKale, I just had my second shot on the 4th, and I didn’t feel any difference from the first one. Sorry you’re having a few side effects. I do notice my hot flashes have been a little more intense, but I’m not sure if it’s the Faslodex or Xeloda. Hope you feel better and get better rest soon.
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Hello friends, just want to share with you this latest analysis of the OS of CDK4/6 + fulvestrant. it's open access only for the next 50 days at this link
Overall survival in patients with hormone receptor-positive, HER2-negative, advanced or metastatic breast cancer treated with a cyclin-dependent kinase 4/6 inhibitor plus fulvestrant: a US Food and Drug Administration pooled analysis
https://www.sciencedirect.com/science/article/pii/...
"The difference in estimated median overall survival was 7·0 months, favouring CDKIs.
Interpretation
The addition of CDKIs to fulvestrant resulted in a consistent overall survival benefit in all pooled patients and within most clinicopathological subgroups of interest. These findings support the existing standard of care of CDKIs plus fulvestrant for the treatment of patients with hormone receptor-positive, HER2-negative, advanced breast cancer"
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Thank you, everyone, for positive thoughts about the faslodex and my reaction. I feel better after eating a sandwich, chips and ginger ale (yum! ) I am encouraged to think it was from just poor sleep and not eating something substantial.
Moth - that is encouraging information. Thank you for posting it!
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Sunshine, I laughed at your post (which was kind of like laughing at myself, lol) because that really IS a great phrase, isn't it? I've used it in meetings at work.
Aprilgirl, I see your table is all set for company! I'll be right over. Seriously, that pumpkin roll looks soooo delicious! Decorations can be lovely, but fall foods really are the best. I'm bummed because the Pumpkin Festival in Half Moon Bay was cancelled again this year...I hope it happens next year and I'm here to go and eat all things pumpkin. And apple.
Rabbit, I lie awake and think think think, too. I try to listen to my iPod sometimes to quiet my thoughts but that doesn't always work. It's ridiculous, but I am still sad that I now have only one breast! Well, not ridiculous, but, I guess I'm thinking I need to keep calm and carry on. And hahaha, that doesn't always work for me. I'm trimming everything back in my yard, and thinking about what I want to plant next year, and then get walloped by thoughts of death and the reality of who knows how I'll be doing next year. Maybe that's why the statues appeal to me so much right now, they are pretty permanent and I can enjoy them as soon as I take them out of the box.
Had a nice talk with my MO this afternoon, I asked her if we could delay the next scan by one month (I'm due at the beginning of December) so I can have a less stressful holiday, and she said yes, just let her know right away if I have any new symptoms and she'll get me in sooner. I really lucked out getting her as my doctor, she's incredibly responsive and professional, and I can usually get her to chuckle at my foibles. Such as...
I had to go in to my office briefly (we're still almost completely virtual with work), and they are keeping all the interior doors open for better air flow, so no one has to touch door handles, etc. I was filling out a couple of forms and casually tooted, as I am want to do here in my home, and didn't really give it a thought. About 5 seconds later, our security guard was at my door, ostensibly to "say hello"...when we all know he was checking to see if I was setting off some illegal firecrackers.
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Hi Everyone,
Checking in, it's been a while since my last post. I have been signing in and reading along quietly and don't really have a lot to contribute, so haven't posted.
Your posts have made me smile, laugh, and cry. And as many have said before, this really is the only place where I feel other people fully understand what I'm going through and I'm grateful to have this place to come to when I need to feel less alone.
Life has gotten very busy, we are supposed to close on a house on Nov 1 after 8 months of searching in this crazy market. The whole process has been very stressful as it is a sellers market and there are so many issues with the house and the sellers won't agree to do anything. I've also been working full time (remotely) and my elder daughter started kindergarten this fall. Life continues to go on, and it feels like it's moving too quickly.
I reduced my dose from 125 to 100 after two cycles and was doing well - ANC was steady at 1.0 each month at the end of my week off, and except for WBCs, all other CBC values seemed to fall back within the normal ranges with the dose reduction. I had a PET scan in July which showed lower suv values everywhere, my doctor said everything was looking good and shrinking. I will have my next scan on Nov 22.
I saw MO on Monday along with labs and ANC was 0.9 so she told me to wait until Friday (today) to start next cycle (can't believe I'm at 7 already). I only see her in person once every three months. From what I've read, it seems like many of you see your MO every month. I do labs monthly along with my Lupron injection, but again, only see doc once. I'm wondering if this is sufficient and the norm or if I should find a more attentive doctor. When I asked her about frequency of visits, she told me she only sees her patients who are on IV chemo every month.
I try not to think about my diagnosis constantly, even though it is difficult not to be reminded daily, and I try not to let it run my life, but I want to make sure I'm getting 'enough' care. I think my biggest concern is not having the physical evaluation regularly. I called her office today when I saw they scheduled the PET to ask if they were going to schedule the telehealth a few days after as she and I had discussed so she could review the results with me. The admin said I should see the results on the patient portal a few days later and I could call her if I had any questions. This isn't what MO and I had discussed and I feel like I'm being blown off.Am I being overly sensitive or is this the norm? Do you all read and interpret your own PET scan results and only speak with your MO if you have a question?? Do you all see your MO monthly and get physical exams each month?
Thanks for reading and looking forward to your responses.
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KBL, though I’m new to this I find that few people really get it. For the few people I e told, almost all have asked when treatment will be over. Other than you ladies, I don’t think there’s anyone I can really talk to.
GoKale, I hope you’re feeling better and you get some rest!
SF-Cakes, I went horseback riding once in Half Moon Bay! I lived in Monterey for about 18 months like 15 years ago. Loved the area.
Rabbit - Thanks I’m happy to be on my second cycle with minimal side effects. It’s definitely better than chemo. Sometimes I feel like I’m a faker because I don’t have telltale cancer signs. I have some pain, in my ribs, right arm, and skull, fatigue, and hot flashes. But nothing that I’ve associated with stage IV cancer in the past.
LGP, I take my ibrance with dinner and I don’t touch it. I pour it out into the cap and then drop it in my mouth from there. No other precautions. Welcome to the group! Sorry you have to be here but everyone here is wonderful.
I too lay awake at night thinking about the future, or lack there of. Today I had the realization that I will likely die in hospice at some point and that was a disheartening and terrifying thought. If I can’t sleep at night I try to listen to a podcast. I really like “You Must Remember This”. It’s stories from Hollywood from its inception to like the 80s. The host has a very soothing voice and the stories are great!
My DH and I are going to the San Antonio Beer Fest tomorrow. The weather finally looks like it will be cool and beautiful.
I hope everyone has a great weekend! Sending happy thoughts
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Sunshine, I’ve only just started my journey but I’m also only seeing my MO every 3 months. But I do see a NP every month for a toxicity check. And I can also email my doctor and get a response within a day or two. I’m also supposed to start with palliative care later this month. My MO also calls me after he gets scan and lab results. I hope this helps
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