Ibrance (Palbociclib)
Comments
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Given this recent query and other threads I've seen around lately like xeloda for non-stage iv and verzenio for stage iii, if perhaps the mods need to make a new area for lower stage ladies on these drugs and we can pop in there for advice and encouragement rather than the other way round? I know most of us are more than happy to help but it really is a different mental place to being on ibrance prophylacticly vs waiting for it to fail/it doesn't work at all.
As an aside, I thought that big study last year took the wind out of early stage use?
I took a walk last night with other half down the street five minutes and then back. Wiped me out good! Even got out my cane from the Sacral Met Blowout of '19 and that helped balance and provide just a little extra smidge of support.
Rabbit- drains came out in the hospital on Wednesday so for whatever reason they don't really send folks home with drains here!
Spookies, your cat is trying and failing to convince that no, they really aren't going to play with that tree. Honest. Who me? You've got the wrong cat lady. Totally innocent.
Dancemom, ill send you a message with more insight.
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SondraF, that’s a very good idea.
I’m sorry you are having a rough time
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Pywacket is always good for a giggle.
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Sondra-Glad that your surgery went well and you were already able to get out for a walk!
I agree that there should be separate threads for non-Stage IV people taking Ibrance, etc. It's a totally different mindset. For example, I have never been weepy or depressed due to the Ibrance. I was dying and Ibrance made my tumors shrink and dried up my pleural effusion so I have been ecstatic on Ibrance for these past 5 years. My mindset would be totally different if I was unsure as to whether there was any benefit it me taking the drug and the side effects would feel much more annoying. The Moderators could give some good guidance on where it would be appropriate to place an Ibrance thread for non-Stage IV.
I am happy for those of you who are not Stage IV and hope that you never get here. But I feel protective of our space (even though anyone can read our posts-it is not really private).
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Chigagoan ,
Just wanted to pop in and say how happy I am to hear about the 5 years. I might have said it already. May I ask how long it took to dry up the effusion? My situation is different bc I have ascites but we are hoping that it’ll slow down or dry up in time.
I’m on my last week of my second cycle at the 75 and hoping that my counts are good and no infection on my off week. I’m going to call tomorrow to see where my midway was at so I have an idea. Like my other posts have said, this is a big deal because if I can’t handle the 75 I’m going to have to fight for other meds which won’t be easy with them .
I know my platelets have dropped bc my gums are easily bleeding and some very slight nose bleeds (but barely anything).I got my hair cleaned up yesterday. It was so scraggly and would not lay properly on my head in any direction , so it feels nice. Plus it was good motivation to get done because my husband has an overnight date booked for my birthday next Friday and I cannot wear my usual cap in a restaurant like that. It’s interesting that I’ve planned my day to include a nap and a drain of the ascites before we go. This is new to me (having to plan ahead) bc it’s the first time in this illness that I’ve had to adjust so I can make it through a date. 34 years old and I feel about 80 at times
As per the discussion re: lower stage ladies in the thread, I think until a new thread is made for them (which there should) , we should try to be open and helpful if we feel we can. I only think so because there isn’t anywhere else for them to ask. But hopefully that thread can be started and they can get help for their situations. I do think it’s a bit different when one is stage four and the other isn’t . I can certainly appreciate the feelings of those who find it difficult to have lower stage women in here asking questions.Rabbit - I’m glad your pain is lower. Happy 40!! I hope I can get to 40. Only 6 more years.
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B-A-P,
It took about 6 months for my pleural effusion to dry up. Hope your ascites dry up soon-I imagine they are very uncomfortable and annoying. I certainly remember having to schedule in my drainages.
So nice to get your hair fixed. Hope you have a great date night on your birthday!
I had my sixth birthday after my terminal diagnosis yesterday-pretty unbelievable!
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Rabbit - I love love love that you are here to celebrate the big 4-0! You are an incredible lady and deserve many more!
Early stage and Ibrance discussion…This is a tough one. Right now using cdk4/6 inhibitors for early stage is so new that these ladies just don’t have anywhere else to go. A new thread is optimal but I just don’t know that there will be enough activity to provide the support they need. But if I was early stage, I would probably find this thread depressing and reading it would amp up my anxiety. And since this is my spot where I can say anything I need to get off my chest, I don’t plan on sugar coating my posts. It’s a conundrum for sure. There is a cdk4/6 Facebook page but again, it’s all MBC patients because until recently this was an MBC only drug.
ReluctantTraveler you need support and a good way to get that support without being unnecessarily scared may be one on one support. If you send me a private message with your concerns, vents and questions, I’d be willing to do what I can to help - to fill that void that’s currently in the breast cancer support community.0 -
Thanks for the info Chicagoan ! I have an indwelling drain so atleast I have the option to drain whenever I feel like I need to. I just need my nurses to bring enough supplies (they never do) lol Hoping I dry up too or atleast have a slower fill. It affects my enjoyment of eating.
Oooh happy birthday ! 6 since! I’m currently at my 4th birthday post diagnosis (I was de novo ) and hoping for many many more.
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I believe that the concerns of stage iii vs stage iv are different enough that there should be a dedicated thread for Ibrance for Stage III or CDK 4/6 Inhibitors for Stage III. But of course stage iv patients who would like to offer helpful knowledge and experience with these drugs can absolutely go offer their input on such a thread. There is already a thread called 'Xeloda for "Maintenance" purposes (not Stage IV)'. Stage iv members who are in a place where they can help lower stages will be happy to do so, while those who are not up to it can stay, no added guilt or stress, in the stage iv forum. There may be other drugs that used to be only for stage iv that are now being given to stage iii.
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RRabbit, happy 40th birthday! Have a wonderful dinner celebration! So happy to hear your pain is less.
Spookiesmom - your cat is adorable and definitely is making a plan of attack on your tree. I have to tell you I am crazy about my robot vacuum - I have the shark that has a container it empties itself into and my husband is obsessed with it (you can track it on your phone and probably make it follow certain paths - I have no idea, just want it to clean!).
SondraF - so happy that your surgery went well, you are home and recovering. The cake you posted a while ago sounds delicious and I plan on making it this week!
Chicagoan - happy birthday, to you as well! 6th birthday after stage IV dx and your long term success on Ibrance are both facts to celebrate and give me hope!
BAP - happy upcoming birthday to you, too! Have a wonderful birthday dinner date, hope your blood counts are ok at your next appt to continue on Ibrance.
SF Cakes - here is hoping the lower back pain is just a temporary overuse in the garden type situation.
Sunshine99 and SFCakes - love both versions of the Winter Wonderland/ Womens underwear song!
Tanya - thanks for the link to the study!
Puppers - I have not had the emotional/mood change on my week off from Ibrance. I did have that when I was first dx with stage IV, prior to starting treatment (getting the biopsy, results, additional scans to see how much it had or had not spread, etc). I could tell by my symptoms starting to go away that the fulvestrant and Ibrance were working which helped me emotionally, in the first month or two.
Dancemom - I had fatigue in the beginning BUT I had fatigue for months leading up to my dx from the cancer as the enlarged lymph nodes in my neck/chest made it hard for me to sleep or lie down. I would say the first couple of months I continued to have some fatigue but it lifted when the lymph nodes shrunk and I could finally sleep comfortably. Like many on Ibrance, I am on a lower dose (75mg) due to consistent low WBC at the end of a cycle. I would think that helps my energy but IDK.
Reluctant Traveler - fantastic that Ibrance is now being considered for lower stage treatment. I was stage 1 in 2008 and had surgery, chemo, radiation and 7 years or Femara with a very low risk of recurrence and here I am.....11 years after stage 1 dx. My advice would be to take the Ibrance, especially at 75mg. I think you will find it easy to tolerate as a teacher and most people don't have GI issues (ok, some people do get extra gas!!!). I had occasional constipation on 150mg but not that often and if I added a few days of miralax it worked out. I work full time and worked throughout the pandemic (following covid guidelines of course) and did fine. The emotional reaction could be from the aromatase Inhibitor and you can try a different one to see if it is better for you emotionally. Or, it could just be that cancer is A LOT to deal with, and in your head you thought you had your treatment all outlined so adding Ibrance is an unexpected addition that was the final "straw" to topple your load. Some cancer centers offer counseling and now that it can be done over a telemed appt, it is easier to fit in to a work schedule.
Scans on Wednesday - this scanxiety just doesn't get easier. My daugther offered to help me create a xmas card (shutterfly). Ok, new years card since it is not ordered yet! I told her I can't even think about it until I get my scan results. Counting down the days and can't wait to get that done. I have my office holiday party Wednesday night - ugh. LONG DAY! Trying to stay busy. which is not hard with Christmas coming and work:) Thanks for the pocket duty!
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Happy Sunday, everyone. Here's a newbie Ibrance question -- the NP was quite explicit about handwashing to avoid leaving traces of Ibrance on doorknobs etc., but what should DH look for as signs he has picked up something somewhere ? This is day 4, and he was complaining about mild nausea. (He was also complaining about a blister on his foot but that certainly was more connected with his 2-hour walk than anything I did.)
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Hi Lauri, I just finished my 24th cycle of Ibrance and live with my husband and son who is 22. I have never had anyone in my household have any side effects or concern about cross contamination. I wash my hands after I take it (popping it out of the packaging can be a challenge!) but I don't wash them for an extremely long time or anything like that. My opinion is that the mild nausea is from something else. Hopefully he feels better soon! To be honest, my oncologist didn't really bring this up as a big concern. She did tell me to take it at the same time every day and that was a challenge for me in the beginning until I set an alarm on my phone!
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Hi Lauri - I asked my MO a while back about if we needed to be concerned about my husband getting any exposure to the Ibrance from me. He said there really wasn't any. I wash my hands after handling it but that's it.
Reluctant Traveler - Like has been said before, the differences between stage 3 and stage 4 is very different and even how the Ibrance is being used. You are talking about about 24 months and done while a stage 4 is using it until it fails or side effects make it where they can't continue on. You just need to start a thread in the Stage 3 area for Ibrance and if there is not a lot of activity on that thread, you may need to bump it occasionally. I just think that it might get to be a really confusing thread if we have stage 3 and stage 4 commenting on the same Ibrance thread in the stage 4 area. Best of luck to you and I hope it works and you never find yourself having to join us stage 4s.
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I don't wash my hands after taking Ibrance, and I live with my husband. So far, so good.
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I don’t wash my hands either. The critters and I are fine.
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Thanks aprilgirl1, cowgal, gokale4320 and spookiesmom for your reassurances -- I may mention to my MO that the nurse instructions are possibly overstated (and unnecessarily scary.)
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Rabbit Happy birthday 🎊 I must’ve missed it, this thread is moving fast! I hope you had a nice celebration with your loved one.
I always keep my meds in my drawer, so when it is meds- time I go to the room and make sure hubby/ anyone is not close/ sitting next to me when I take them, when I am out at friends/family house, I take extra cautious, take my meds bottles in a plastic bag before put them in my purse, and step out when I take meds. I also put empty bottles in a plastic bag before bin them. because ‘hazardous chemo drug’ on the package make me cautious for both ibrance and femara.
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In your pocket Aprilgirl for your scans this week. I've got chocolate macarons if you'd like, and I'm also happy to sing any song from West Side Story for you (very excited about the new movie version coming out this week). "When you're a Jet", maybe we can all be a gang and snap our fingers walking down the street? Perhaps singing the women's underwear version of Winter Wonderland (thank you Sunshine, and yes, I've been singing that as the chorus!)
Rabbit, woo-hoo! You're forty! FORTY! Happy birthday, sister. So glad you're here.
I was never told to be careful about handling the ibrance pills, isn't that funny how different doctors tell us different things? Funny not in a har har way, but funny in a can-I-get-a-second-opinion kind of way. Like I'm going to look at you like Spookiesmom's cat and then (metaphorically) knock your tree down kind of way.
My back feels a lot better, thankfully. Pain sucks. Pain freaks me out, as I'm sure it does all of you. I've used a little bit of a CBD/THC tincture for pain relief and I end up just feeling kind of relaxed. I'm thinking kind of relaxed is where I want to be. After I knock that tree down.
Sending relaxation and pain-free days to everyone here. 🎄 🐈
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so my mid way bloodwork came back and my ANC was 1.7 Friday. Last time on the 100s they were 1.9. So I was hoping on the 75 that at this point the counts would be atleast a little bit higher. So I’m nervous. It’s not to say I’ll get an infection again for sure if they keep dropping but the uncertainty sucks. Last cycle my counts dropped significantly on my week off which I thought was weird since I thought they were supposed to go up ? According to the pharmacist, they’re supposed to bounce back pretty quickly so I don’t understand why my body has trouble with it. Fingers crossed guys. Fingers crossed. Sigh
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HAPPY BIRTHDAY TO YOU 🎂💃🌷🥩🍦🍷
Enjoy everything!!!!
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Both Ibrance and Faslodex (and Letrozole which I used to take) all have potential side effect of shortness of breath, cough, lung inflammation, lung clot, etc. I am not in an emergency situation, but I do get out of breath when I walk fast or uphill, or even if I am talking and have a lot to say (lol, there’s a joke in there, I’m sure). I have also had a cough for a couple months, but my nose has been runny like a seasonal allergy situation . My resting heart rate is on the high side but not alarming.
So for a while I thought my short of breath was from decreased exercise, and cough from allergies, but now I wonder if it’s from Ibrance or faslodex. This all started after I switched to faslodex. Or it’s from cumulative use of Ibrance. I will wait until I see my doc in 3 weeks.
Has anyone else had cough or shortness of breath but doctor determined it was okay? (I don’t want to switch meds).
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I'd call now, honestly. Shortness of breath and persistent coughing can also be a sign of cancer in your lungs. Weird lung happenings are how my cancer's return was discovered.
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GoKale, there is a risk of Ibrance induced Pnumonitis , I have seen a couple of women on BC.org post about this issue. I would call your MO tomorrow, just to be safe. Let us know what the doctor has to say, OK?
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Here for pocket duty for Aprilgirl!
You Can, You Can, Do this!! You Can, You Can, Do this!!
You will, You Will, Rock this!! You will, You will, Rock this!!
Anybody else have scans coming up??
How goes it Ibrance newbies? Anntop, Lemon, Lauri, Parakeet, Dancemom, Puppers, etc?
Candy, how ya doin'? Cure-ious, how ya doin'? Ciaci? Other original OG's to the Ibrance dance?
B-A-P, I'm crossing fingers, toes, heart and eyes - basically all that can be crossed.
Always feel like I'm holding my breath when one of us goes through scans. I'm not even scanning today and I've got dry heaves. Just goes to show how connected we all are. We all go through everything with each other.
Come on Stable Mable!
Threw my hat in the ring for the study Tanya posted a few posts back. Lady I spoke with was very very nice. Any of you Verzenio ladies hanging around, the lady told me they seem to be getting a lot of Ibrance respondents but not many for Verzenio or Kisquali so I think your chances of getting in the study might be higher. Will get a call back if I'm accepted, so waiting.
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GoKale - I am on Faslodex and Ibrance as well and I do experience shortness of breath that I only notice when I am trying to walk fast or uphill like you mentioned and have assumed that it is a normal side effect since it is listed and I don't notice it otherwise. I do not have coughing but I am also experiencing allergies that I deal with all year long. I just had scans the week of Thanksgiving and everything was still NEAD on the bone and CT scans. I would mention your symptoms to your MO just in case and see what they say in case it is more serious.
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Rabbit- Thanks for thinking about me as an OG of Ibrance LOL (even though I have moved on from Ibrance). I posted my latest scan results on Nov 23rd- 4 pages back. I thought I posted an update here. You can read that so I do not have to retype it.
I am just continuing on with Lynparza. Next CT (for the lung thing) is mid Jan and the next MRI for the liver tumors is not scheduled yet (probably Feb since that is 3 months). My nausea is better from the Lynparza after we lowered the dose that 1 time.
I will always post updates here, as this is one of my favorite Threads. And I read here all the time to keep up with you all.
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Rabbit, thanks for the mention of those having scans. I have my MRI in a couple hours. And I’m not so great at the breath holds so I appreciate you holding your breath in solidarity. I’ll report back.
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Rosie pocket duty!
Rabbit I hope the study gives some type of information that can be used in the future for better care for people taking these drugs.
Tany
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Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC
To register, go HERE.
After registering, you will receive a confirmation email containing information about joining the meeting.
Hope to see you there.
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BAP - I’m sorry to hear about your additional stress. You have been through the wringer lately and that makes me sad. It may not make you feel better but on the off chance it does I want to share that my ANC has never been as high as 1.7 on either Ibrance or Verzenio. And I was on 75 mg Ibrance and am now on Verzenio which is often kinder to ANC. Also, after 7 days off of Ibrance, I also dipped further. Very disheartening but after 14 days off, my ANC would come back up. I took Ibrance for 19 cycles when I was moved to Verzenio due to progression. I hope your body starts to cooperate and that you feel better. You deserve a break from this madness
Rosie, keep us updated on your results. Aprilgirl, in your pocket. Candy, it was good to hear from you again.
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