Ibrance (Palbociclib)
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Did something happen to Cure-ious?
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BAP- I was thinking similar to RK2020, wonder if they will switch you to faslodex from femara ? I want you to know that your case of liver crisis in the hospital and how YOU asked to try Ibrance has really stuck with me. I learned a lot from you and we all know although we aren't doctors we sure learn a lot on these discussion threads from each other.
PatMcG - good to see you post ! I miss Cure-ious ! I don't think anything happened to her but when bc.org had their "update" and it was so challenging to log in or post , seems like a lot of members stopped checking in
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B-A-P, thinking of you. I agree with RK, the waiting is the worst. One of my in-person support group members did end up on a different CDK inhibitor after she had a bit of progression after ibrance, and I recall others here sharing that their MOs had them go back on ibrance/verzenio/kisqali after they had tried something else. My MO said a similar thing about switching from femara to faslodex when progression happens, it seems to depend on where the progression is, of course. Sending you lots of ❤️
One more time, loud so everyone in the back can hear it, I HATE this disease.
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thanks guys. For some reason my faslodex isn’t showing up in my signature. I’m actually on the injections with the ibrance. I failed femara after a year or so on it. It’s great to have you guys to bounce these ideas from because then I’m not holding myself back in asking for other inhibitors. I’m going to start making a list for weds to have for her. I’d like to stay on oral targeted therapy If I can
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b-a-p - No expert here but I assume that you will probably start getting monthly XGEVA shots for the bone mets. I think the others also might be right about you getting moved to Faslodex.
annetop - congrats on NEAD and I love the poster from Italy!
sf-cakes - Concerning fatigue. Yes, we all get it. a Good friend of mine was telling me about another friend of her's that is going through cancer treatment was telling her that she was experiencing fatigue. She then went on to tell me that understood what that was like because she had worked hard in her yard all weekend long and I had to explain to her that she was really tired but she had not experienced fatigue and described it for her. It's really something that for most people if they have not experienced it, they can't understand it. I too, worry about what pain the future might bring. All these drugs we take to try to beat the cancer back...what will they do to us long term?Tanya_djamila - I think the damage from the Faslodex shots occured within my first few months of starting injections and I have never recovered. I have made some adjustments that have reduced the pain but it is chronic for me. It just took a turn a couple of weeks ago and then the bottom dropped out last Saturday morning and I have been trying to get my way back all week to my "normal" pain levels. Claritin doesn't seem to really do anything for me around shot time. I dread monthly shot day too! I hope that if the oral SERD gets approved that they will let those of us switch from injections to the oral but I wonder if Faslodex for insurance purposes has to fail first or if the oral will need to be cheaper than injections to let us switch.
Waving at everyone and wishing everyone a wonderful weekend!
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i was finally able to update my signature with the faslodex. Sorry for all the confusion. I've been on it since October
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BAP - The signature bug strikes again. I’ve updated my profile and yet it won’t update in my signature. This is not a recent bug. I had problems in the old version and again tried getting it to work in this new version. No luck. Sigh.
In lieu of getting insight from Cure-ious, I think you might find this article comparing Ibrance, Verzenio and Kisqali interesting. https://www.frontiersin.org/articles/10.3389/fonc.2021.693104/full
All three drugs inhibit CDK4/6 kinase, however Verzenio inhibits multiple other kinases as well. Verzenio is 14 times more potent against CDK4 than it is against CDK6 and has five-fold more potency for CDK4 than Ibrance or Kisqali. Unlike Ibrance and Kisqali, verzenio has been shown to have in-vivo inhibition of CDK1, CDK2, CDK5, CDK9, CDK14, CDKs16-18, GSK3α/β, CAMKIIγ/δ and PIM1 kinases. I don’t pretend to know what that means but my take is that although these drugs all belong to the CDK4/6 inhibitor class, they work slightly different. If I remember correctly, Verzenio is the only one that crosses the BBB. All this to say that it makes sense to me that Verzenio may work when Ibrance starts to fail. But I’m no doctor.
I read somewhere else that there is a recommended waiting period between switching from Ibrance to Verzenio. My switch to Verzenio was a failure but it works for some. If I had to do it all over again, I would have tried another drug in between Ibrance and Verzenio. But I made the best choice I could at the time. No regrets. I’m just moving forward.
One last comment…I’m on xeloda now (although you would never know it from my signature). Although this is oral chemo, I’m tolerating it well after completing 4 cycles. Sunday starts cycle 5 and even though I do have side effects, I’m tolerating it better then either Ibrance or Verzenio. It’s easier on my blood, easier on stomach and so far my tumor markers are going down, down, down.
AnnTop - You’ve inspired me to sit in my lanai this afternoon with a good book while I sip tart cherry juice out of a wine glass and pretend it’s wine. With my liver, that’s as close as I’m getting to wine these days. And Naples FL is as close to Naples Italy that I’m ever going to get. That’s ok because I’m HERE to enjoy the day. And that, my sisters, is a gift in and of itself.
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BAP, you have got many good responses, the only thing I can add is that for bone Mets there is another option: radiation therapy. With radiation they kill lesions so you don’t need to change your target therapy. Another thing, my current MO and former MO, do not believe that pet scan is reliable enough to show lesions correctly, sometimes some metabolic or physical non-cacer issues are shown as uptake. Please report back once you meet your MO.
Hugs to all, 🥂 to a peaceful weekend
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Good point Snowdrop. Although I get quarterly PET/CT scans, I’ve never gotten radiation without first getting an MRI of the specific trouble spot. The MRI seems to give a clearer picture for the RO.
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rk2020-I also sip tart cherry juice as my wine substitute. It's really not bad at all. I wish I didn't have to keep it chilled after opening but it's the best substitute I've found. Cheers!
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B-A-P,
When my bone mets were found, my MO said that they are very hard to identify in most cases. When they first identified my bone mets, I was shocked that they were there, because I hadn't heard anything about bone mets prior, only about liver mets. So the MO checked with the radiologist and that's when he said that bone mets were hard to identify and hard to read. Plus, even if they are healing or healed, they still show up on imaging.
I think you will just have to wait and see what your doc has to say about all of this. If you really want answers, you can try to reschedule your appointment -- perhaps get on a waiting list for cancellations?
Good luck.
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snow drop , RK , Bev - thanks so much for your input . I’m writing everything down and hoping that we come up with a solid plan. The radiologist did say to do an MRI of liver and spine. Since the liver is so scarred they are worried perhaps small changes are being missed.
The area of my lung concerns me more than anything but it’s reassuring that there is no nodules to correspond with the uptake.
All that being said is I do notice my low back to be quite sore than usual. But could be cincidental
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oh and it’s showing varicies lower down so I asked the GI doc to make sure she looks at my scan as well to make sure she sees them and hopefully can be monitored closely.
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Good afternoon ladies.... It's been awhile. I had to step away for a bit and when I decided to come back I couldn't log on. So I stayed away even longer. These last almost 2 months have been up and down for me. I am still working as an active duty military member but I work a modified schedule, usually 8am to 2pm. Some days are good and some days I have to modify even more. I have a lot of fatigue but push through my days as best I can. I am about to take on a new role at work, kind of a promotion of sorts, and i hope it doesn't lead to a lot more stress.
Treatment has been going okay. I've had to take more time off between cycles. I've mainly been operating on a 3 week on / 2 week off schedule still on 125mg. My MO doesn't want to switch doses since my WBC does rebound in that second week off. My lesions are all over the place and I have had some bone pain as a result. So I've been on a low dose opioid pain killer since January-ish. This has complicated my already bad bowel habits. I've been taking 2 sennas twice day for the most part. However, 2 weeks ago I spent an evening in the ER for an impacted bowel. Talk about the most embarrassing and humiliating reason and treatment! Now I've scaled back my sennas and have become militant on my water intake. I feel like I am sloshing everywhere. I take ibrance in conjunction with anastrozole. Currently my joint pain is awful. My elbows, wrists, fingers, hips, knees, ankles, and toes ache. My fingers, wrists, and elbows are the worst. And the pain from it makes me extra vulnerable. I can lean grumpy or emotional. Today I am super emotional. Typing is uncomfortable. I feel like I'm super old but I'm only 41. I've had to up my anti-depressant because I've been a ball of emotions for the last 4 weeks. I've had to leave work several times because I've been on the edge of tears for the whole day. My next scans are on 16 May and my MO has ordered a full body, tip of my head to my tiptoes, scan. And then I'll have a follow up with him on the 18th.
I'm sorry to vent on my first day back but it's been a trial and I know y'all understand. I've read the posts I've missed and I wish each of you happy days and less pain! I've missed everyone here and the support we offer each other. I hope y'all are doing well!
Sending hugs and trying to muster some happy thoughts
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Katyblu - I am so sorry. I have been going through a rough patch for a few weeks with pain too. Only people who go through what we are going through can realize how hard it can be to make it through a work day. I am 58 and worked for the same company for 27 years. I am thankful that even though they can probably tell some days I am hurting, they just let me get my stuff done. I have said for years that it may not be pretty how I get things accomplished due to my cancer related symptoms but I manage to find a way to get things done. I work in agriculture and my job is about 50 percent in my office and about 50 percent out around cattle or crops.
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Cowgal - Wow! That's a lot of physical work. I'm sorry you've been having a rough patch as well. I just wish our bodies would respond like our minds do. I feel like I can so much more but my body just limits me. And I feel depressed and worthless because of it. I thought I got over the whole shock of my DX and the repercussions back in December but it's really hit me hard lately. I've been having dreams that I'll only make it a year and a half into treatment and my mortality has really hit me hard.
I am so glad that your job understands and gives you the leeway! I hope things start to look up for you very soon!
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I went through a rough pain patch too. Using a walker at home, cane when I did go out. Stopped the letrozole thought that was cause, kept on with ibrance. Podiatrist shot Xray said it was arthritis and put me in a boot. Fine for my foot, what about the rest of me.
A friend works at a medical marijuana dispensary. And told me her stuff could help. My pcp can’t write me pain rx because of my other meds. So I got a mj card, and a few different things to try.
What a difference!! No more walker. Cane very rarely now. Don’t feel as stiff, definitely sleeping better.
I was really surprised. This may not be for everyone but maybe something to think about.
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Hi Ibrancers - just checking in. I can NOT believe it is May already.
Spookiesmom - that is fantastic about the medical marijuana and how it has helped - no more walker! Good for you. I think SF-Cakes has had some success with medical marijuana as well.
Cowgal - good to see your post but I am sorry to hear that you have hit a rough patch and are in pain. With a physical job that has to be really tough. It is great to hear that your coworkers are understanding and that you have been there for 27 years. Hope you have less pain soon.
KatyBlu, I am so sorry that you are in serious pain, too
You are right that no one understands how overwhelming this experience is, besides those that are walking the path with us. Since you are active military you probably can't try medical marijuana but have you thought about switching from arimidex to femara? Maybe it would create less joint pain? Ask your oncologist next time you see them. I am sorry to hear you are having nightmares (not dreams!) . In your pocket for scans on 5/16 - please check back in and let us know how you are doing. I have my faslodex injection and blood test on Wednesday. This month it will be at the satellite clinic closer to my home so I will have a telemed appt later that day with my oncologist. The fact that it is not going to take me all day to get these done makes me less stressed. Assuming blood work is ok I will start Ibrance up, maybe cycle 31? Scans will be in June. It is a weird reality we live in but I am just trying to keep on keeping on.
SF-Cakes, how is your father doing? I just took a flight to Palm Springs to visit my parents and take my mother to an important eye appt. She has developed macular degeneration, and the type she has is dry which there is no treatment available. They will conduct special retina exams every 4 months to check the progression but it is clear she will lose her sight, it is not clear how long it will take to progress. She is the caretaker for my father (who can no longer drive and uses a wheelchair). She will need to stop driving and my sisters and I will need to help them make some changes ie move to a senior care facility, get my mom some kind of specialist to help her learn how to navigate as she loses her vision and all of that. She is 85 and has been in great health so this is a shock to her. Tough decisions ahead!
Love and good energy sent from me to all of you!
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Spookiesmom, I'm so glad that you've found something that works for you! I wish I could partake haha!
Aprilgirl - I'll look into femara. I really don't know much about it so I'll have to check it out. Thank you for the suggestion. I definitely need to do something as the pain is detrimental to my everyday activities.
SF-Cakes, thinking of you and your family!
B-A-P, did you get your results from your onc? Any changes to your treatment? Thinking about you!
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katyblu- maybe you would feel better with a dose reduction to 100 mg- many people do super well and feel better and their bone marrow bounces back quickly. The efficacy is not supposed to be less on the 100.
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Wow, can't believe I was actually able to log on today! I don't know if it's my laptop (battery is shot, but not replaceable, and can't afford a new MacBook yet, so am using this plugged in 24/7, but it's still very slow!) or the new pages (not a fan), or a combination, but most of the time I can get to the Login screen, and that's it...
Anyway, just wanted to come in and say it's been 5 years since my de novo Stage 4 diagnosis, I'm on Cycle 63 of Ibrance/letrozole (my first line treatment), and am still doing well. If anyone remembers, they did a Circulating Tumor Cell test last month, because of a suspicious "thing" on my spine that did/didn't look/act like cancer (depending on who you asked, LOL). Results were really good - Zero cells showed up. So we're going with the hemangioma theory, and will follow up with a PET scan in three weeks. Still feeling great, even though it's been cool & rainy every day since we returned to New Jersey from Florida...
Just in case I can't get back in here regularly, I wanted all of you to know that I think of you often, and wish all of you the very best of everything. For those in pain, I wish you relief. For those who worry, I wish you peace. Love to all!!
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ciaci, it's so nice to see your name pop up under the recent posts! Cycle 63 on Ibrance is encouraging. I'm on cycle 25. I'm always happy to see "old, familiar" names show up. I'm not enjoying this upgraded site, but it's getting better.
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ciaci - Great news! Well, except for the login problems.
I just completed cycle 24 and on another 4-week break. My counts aren’t recovering well. 🙁
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I, too, love seeing the familiar names back here! The site upgrade really didn't help matters, like Sunshine said, I'm not really enjoying this new site, amen to that.
Ciaci, it always does my heart good to read your posts! I'm so happy the circulating tumor cell test found nothing!
Katyblu, I hope your work promotion is less stress for you. I'm sorry about the pain, and I hear you about the everywhere joint pain. It sucks! In your pocket, for scans later this month. I wonder too about Nkb's suggestion of a lower dose of Ibrance? I had to drop right down to 75mg because my body couldn't handle the 125.
Serenity, also sucks that your counts aren't recovering well between cycles. I forget which dose you're at. When I disastrous first cycle with 125, my MO and I talked about possibly trying one of the other CDK inhibitors.
Cowgal, have I said before that I love your user name? I love cows, although I don't have any cows and don't do all the physical work that you do, holy cow! 🐄 Your comment about only folks with MBC know just how hard it is to still work resonated with me. It's so different, even though I try to pretend it's not.
Spookiesmom, I'm so glad to hear you got some good pain relief with cannabis. I use a tincture at night to help with sleep and it does, a lot.
B-A-P, thinking of you and hope you are doing okay.
Aprilgirl, I am so sorry to hear about your Mom's macular degeneration, I imagine she is kind of scared. I hate that there's no treatment for the type she has! It's also hard to be farther away from family. How are you doing?
Thank you for asking about my Dad, he did pass away on Monday night, at home in bed, with my Mum by his side. I am taking some leave from work to spend some time with her, and also just walk around, looking at the sky and stars and beauty in this world. My Dad loved sailing, and I recall that poem about death, sailing out of sight beyond the horizon, those of us left behind can't see him anymore but he was greeted warmly by those in the great beyond.
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sf-cakes - I dropped to 100 recently and my TMs stopped dropping so I'm hesitant to go to 75 now. I'm so sorry for your loss. I'm glad your mum was with him. Is this the poem you recall?
https://allpoetry.com/gone-from-my-sight
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KatyBlu and SF Cakes, Thanks for checking in. I have been over on the liver mets page.
My MO said she's not really worried about progression. We are going to do the Liver MRI as per the radiologists suggestion to double check but the Liver itself isn't showing PET activity. As for the spine, we will do that MRI too. She said that its uptaking but they see absolutely nothing and agrees it could be an early catch but there would be no reason to change treatment just yet. They wouldnt radiate unless i was at risk for fracture i think, and pain. The lung, again, uptake but no Nodules to be seen and she feels like waiting the 3 months for the next PET to reassess. So I guess that's good.
Still having the nausea and vomitting intermittantly and Not one doctor has a clue. Perhaps it's my draining, perhaps, this or that.. but nothing for sure. Symptom management dr wants me to take anti emetics frequently to be on top of it at all times and see if it works. Where it happens at specific times of the day ( usually middle of the night or early morning) I don't see how it'll make a difference but whatever. I'll try something. I have an Ultrasound lined up for my Gallbladder. Symptom management dr doesn't seem to think that's it, but my MO thinks it's a possibility. So we will do that and either rule it in or out. Doesn't hurt to check.
My LFTS were bad last week and same with my Bili. it was 29 when it should be less than 20.5, but luckily this week it's down to 22. So we are seeing an improvement there atleast. Hopefully it keeps improving in the right direction.
I start cycle 7 next week and I'd say it's a go as my ANC was 1.5 today. I can't imagine it dropping again, but only getting better.
All to say that this has been extremely frustrating to say the least but I guess it's good it's going in the right direction at the moment
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Ciaci, I am glad you managed to long in before the headache of new features making you given up. Good news deserves celebration 🍾
SF-cake sorry for the loss of your father. Nature is definitely good remedy for wounds. Bless your heart, stay strong with your mother.
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Serenity, thank you, yes, that's the poem I was thinking of!
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Hi All -.
SF-Cakes. I am sorry to hear about your father. It is wonderful that you could take some time off from work to spend with your mum. I love that poem. I also love the song Come Sail Away by Styx (gotta love the 1970's ballads) which I realize is not a great comparison to the poem but the line" a gathering of angels appeared above my head, they sang to me this song of hope and this is what they said, they said come sail away..." He was greeted by his loved ones in the great beyond for sure. Also, I love your new byline "This is some bullshit" indeed.
Serenity - thank you for searching for SF-Cakes poem! Re: Ibrance dose, I have been on 75 mg for a little over a year (total Ibrance time 2.5 years). I asked about the dose yesterday when I had a video call with my Onc. NP. I asked if we should try to go up to 100mg again and is that better for avoiding progression. She said my oncologist (and her) believe 75 mg 3 weeks on and 1 week off is better for me than 3 weeks on and 2 weeks off because even on 100 mg I was needing too many cycles with an extra week due to low ANC. But - I know women who are take Ibrance 2 on 2 off and all different combinations. My anc yesterday was .96 after 1 week off. Onward! Kelli (Nurse Practioner) also told me she thought of me on Monday when she had a patient in who has been on Ibrance for 7 YEARS with stable / no progression. WOOHOO! This leads me to...
Ciaci - how I love your posts! Thank you for battling the issues with the website and posting - always so great to hear from you.
B-A-P - it is good to see things going in the right direction for you and what a relief that you have a liver MRI scheduled. I sure hope you start feeling better and don't continue to have the vomiting and nausea.
Hope everyone else is doing well! Thinking about Chicagoan, Chico, MaleBC and others!
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aprilgirl1 - I’ll ask my MO about dropping to 75. I was on 125 for a long time. I see him after 5 weeks off Ibrance. I had to take several months off last year so this isn’t the longest I’ve gone without it. Wow, 7 years stable is great news!
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