Ibrance (Palbociclib)
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Hi everyone - I’ve been on Ibrance, Xgeva and Faslodex for 13 months and never had any bad side effects to speak of....except this past Wednesday when I received my Faslodex injections, I have had such pain on the right side - sharp excruciating pain when I try to stand up straight. I called the oncologist office yesterday after taking Advil and ice packs and am walking hunched over so I can get around but now my back is aching because of the odd walking. The oncologist ordered naproxen 500 mg and I’m taking it twice a day with food and alternating heat and ice packs on my right buttock at the injection site. The oncologist office said it sounded like sciatica inflammation from the injection. This is so painful it is debilitating, and I’ll be calling them again on Monday, if it does not start to improve. I was in tears earlier today from the pain. Anyone here ever dealt with this problem? I could not find anyone with this complaint on breastcancer.org. Any advice would be appreciated? If you’ve dealt with this, how did you treat it and how long did it take to go away? Thank
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Sharware, best check out the Faslodexgirls thread ... there are several folk there with similar issues who might be able to help.https://community.breastcancer.org/forum/8/topics/816419?page=112#idx_3340
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Hello ladies
Been awhile since I checked in
Just started cycle 16 at 100mg. Mouth sores that had diminished at the switch to 100mg from 12 cycles at 125mg made a liar out of me this last cycle. Ouch. i don't think me having mighty hot sauce twice during the cycle helped me much tho, lol.Coming up on my 2nd anniversary in May, i feel and have been feeling the anxiety of it already. Its also scan time again for me in March. Want to push out til April so i'm out of snow season. Winter wonderland is an understatement weatherwise here.
Welcome to all the newcomers
Ibrance is lightyears better than chemo in terms of tolerability, at least i've found it that way, its just the emotional part that can be challenging sometimes. Hang in there On a side note, I will say that laughter is good medicine. But we cannot allow it to make us tone deaf to the reality of this disease and the reality the majority of us face at Stage Iv of a shortened span of time. It can feel disenfranchising to the struggling in coping with this disease sharing those struggles when this disease is reduced to a laugh in- as if they would be the party pooper by emoting - Also a dishonest vantage point to outsiders that this is something we can "beat" given the "right attitude". I was told by everyone early stage, i'd be okay, live a long life, this was temporary, they were horribly wrong. Unfortunately sometimes it feels like those sentiments carry over even tho I've become Stage IV. I have no issue with hope. But give me real tangible hope. I'm trying really hard to say what i mean in as nice a way as possible.
Aprilgirl, as always thank you for the shoutouts. Jealous of your new yard visitor
Jackie, your on my mind, hope your doing ok
Candy, on my mind too
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Thanks, Karen in Scotland! I re-posted my comment/question on the Faslodex thread - missed it when I looked on the site so I appreciate your help. ♥️ Sharwar
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Hi Rabbit. Let us know your scan date so we can be there for pocket duty. Mine is March 22.
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Candy-678 & Rabbit,
Good luck with your upcoming scans in March! Wish you both the best!
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I’m signing up for an Ibrance trial for her-2 positive mbc. Anyone else doing this trial
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Katrose and Candy thank you
Candy, will let you know the dates. i have you down for the 22nd of march. Scanxiety begins. Here's hoping for Stable Mabel for both of us
Newbies you'll do great on ibrance, i was terrified taking my first one, but it wasn't as bad as i thought. I kept thinking chemo and its not like chemo. If your throat gets dry, Ibrance makes my throat dry, worse behind a mask, pop a couple tictacs or a mint or a losenge of some kind to keep your mouth moist. Helps alot. Also, don't be surprised if your a bit gassy. Prune juice is a staple in a ibrance dancers fridge too.
PS: Still sleeping on my own
Woo! No aid in sleeping (Ambien). No anxiety pills. Since October. It was very hard weaning off after being on over a year, but I did it. This has been a game changer for me in coping. I was sorta determined to get to this point because with lockdowns tight where i am it was difficult getting refills and I didn't want to have to count on it. MO still hasn't brought up vaccine. Ok with that.
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I saw your post on the Faslodex thread Shaware and you’re welcome.
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As has been discussed here, the pills are to be kept in the blister pack, not your pill minder.
Does anybody know WHY? I’m more likely to forget it if not in with the rest of my meds.
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The blister pack keeps the tablets dry. Guess they're affected by humid air.
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I pray that my comments about the power of laughter haven't offended any of you as I couldn't bear that.
We all have a variety of coping mechanisms and this became mine as a young child. You didn't ask but I'll tell you where that came from. My sister and I had an extremely abusive father who came into our room at night and scared us to death. When he left and we shivered, reaching out for each other in our shared bed, one of us would eventually let out a giggle of relief. The other would join in and before you knew it we had overcome our fear. We had no idea what a big life lesson that was.
Becky and I have spent a lifetime talking through our troubles, crying about many of them and finally, finding something funny about our journey. We cared for our mother as she died when we were in our thirties. She was our dearest friend and had saved us from taking any actual licks from that monstrous father. We shared a bed in her sickroom and had many funny moments (as did Mother).
I saw from my mother that there is real tangible hope in finding amusing moments in a day where you know your time is short. I'm thankful to have learned early on that we make conscious decisions about how we live our lives and deciding to laugh has been a good one for me. I hope it is for you.
Much love from PatGMc
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Ugh low counts again, so holding for a few days and I'm getting some neulasta shots as a party favor to take home in advance of the surgery end of the month. MO doesn't want to knock me down to 75 unless it's a trend of a few low months - my eating was terrible last month so I'm not surprised!
I mean I had a pile of curried lentils and red cabbage for dinner last night (do not attempt this without good home ventilation systems in place, people) cmon marrow, get with the program!
Definitely back to intermittent fasting and cutting out the junk. Feb is over, gotta get beach ready!
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Good morning dancers! Here’s my quick update.
1 - I’m all vaccinated. My MO did not have me stop Ibrance for my shots. When scheduling my 5 radiation oncologist, I told him that on the upcoming Wednesday, I was already scheduled for my vaccine and Fulvestrant. He saw no reason to schedule my rad around the vaccine but I’m glad that scheduling did not allow me to start radiation until the following Monday. Dose number 2 temporarily kicked my butt a bit. The SE started about 2 hours after receiving the shot but didn’t have me bed bound until about 12 hrs after. My fever, chills, body aches and headache lasted about 24 hours and then I was up and about. Even though I had SE, I’m so glad I got the vaccine.2 - I completed 5 radiation treatments on T11-L1. On day 1 I started feeling a strange sensation throughout my hip and butt region. This is where I used to have extensive mets. It was like electricity and made me feel like I had restless leg syndrome of the butt. Lol. Day 2 started a constant pain and pressure in this same area as well as fluid buildup on a previous surgical site that always troubles me. That night was truly awful but on day 3 it started to slowly subside. The RO seemed mystified that I was having this type of a reaction. 🤷♀️ The restless butt/pain has now subsided (mostly) but on day 5 my esophagus started having constant spasms. It was like food was stuck in my throat and my esophagus was trying to get the food down. Swallowing saliva felt like I was eating a whole pizza pie without chewing. Anyway that is now getting better. So strange that my reactions were not directly in the area treated. Well, I’ve never been a textbook case so why start now. On the bright side, my back is also improving.
Take care ladies! Mwaaah!
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Only a year late, but my reup on Ibrance is the tablets. I dunno how I feel about that but I guess we will find out!
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PatgMc, you made me want to cry and then laugh with your post. Thank you, as always!
SondraF, I'll keep that in mind if I decide to have lentils and cabbage.
RK2020, congrats on the vaccine. I'm sorry you had such a rough time with the SEs from radiation. I had a total of 13 sessions, and I guess I got off easy with not real SEs.
Happy Monday, everyone!
Carol
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Thanks for the replies for the Xeloda blog. I have successfully been able to log in and will keep up with the posts.
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Hi Miss Rabbit...been thinking of you too and hoping you are doing well.
I'm having my 6 month scans (bone scan/CT scan) on Wednesday. They are actually a little over a month late due to Covid being everywhere. If you all can keep me in your thoughts and prayers I will definitely appreciate it. Thanks everyone.
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JACK5IE- Pocket duty for your scans on Wednesday. I will bring the gooey cinnamon rolls.
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Thanks so much Candy! I'll be in your pocket when it's your turn as well!
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Jack5ie,
Will be in your pocket for your scans as well. Good luck.
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Thanks Bev!
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Just popping in to say Hi to all. I read the posts almost every day and try to keep but I am not nearly as good at that as some of you, especially Candy.
I'm ready for pocket duty for all who are having scans and will be praying for good results for all. Mine is coming up on March 8. I'm still dealing with ONJ as well. Haven't been able to get a Covid vaccine yet but hopefully my turn will come soon. My Onc also told me to go ahead and get the vaccine regardless of Ibrance cycle.It would be interesting to know why some recommend week off before and after and other's don't.
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Hi, everyone! I haven't been on here for a long time... no real reason, just felt like I needed a break.
For any newbies on here, I want you to know I was switched to the Ibrance tablets (after almost three years of capsules) since early last Summer, and I had my every-6-month PET scan in January - still NEAD! A lot of people worry about the tabs vs caps, but I saw no difference.
I plan to get the COVID vaccine in May, when we're back in New Jersey, and my oncologist has not suggested any change in my Ibrance/Letrozole schedule.
Wishing everyone positive vibes on their tests / vaccines / dosage changes / side effects.
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Lee- Pocket duty for March 8.
For those that have mentioned getting the Covid vaccine and your MO has said not to do anything different with your Ibrance----
Each case is a little different and I would do what you feel is right and what your MO suggests for your case.
My MO did suggest I stop the Ibrance for 1 week before and 1 week after Covid vaccines (both of the doses of vaccine). But I am also doing the on 5 days off 2 days schedule for Ibrance, so I do not have the normal week off. I have been fighting low ANC numbers for a long time. I am on 75mg and the 5/2 dosing schedule due to my counts. My MO wanted my counts to be as high as possible so the vaccine would "take" so to speak. With my numbers being consistently low, I guess she thought the immune response to the vaccine would not be very high. Also, my scans have been pretty stable and I have not taken any Ibrance vacations, so she said to take a mini treatment break for the vaccine.
I am now done with my vaccines and getting back on Ibrance 5/2 schedule starting on Thursday. I scan again March 22, so we will see if the additional time off the med changes the outcome of the scans. (I did keep on Letrozole and Lupron)
Take care all.
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Hi all! I am in my second round of Ibrance and sometimes have a pain in my liver that feels like a stitch you get from running. Has anyone else had this? I am on the Ibrance/Letrozole/Zoladex trio. I have just seen that some have progression in liver on Ibrance. I can tell it is really helping the breast tumors. TYIA! Hope everyone is feeling well today!
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Ok. Get this. My labs 2 weeks off Ibrance for vaccine are now WBC 2.4 and ANC 1000 (1.0). Wonder if the vaccine (given last Wed) dropped them down some right after the vaccine? We did not check that. But just to be at ANC of 1000 (1.0) now, in time to restart my Ibrance after 2 weeks off, shows that I am still struggling with my counts. Just my thoughts. I have call into my MO nurse to ask.
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Just lovely to hear from you Ciaci....some of us were a wee bit concerned about you, but all is good for you!
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Arc1970 - I don't have an answer for you but welcome to the Ibrance thread. It's good that you can tell it's helping your breast tumor.
Ciaci - good to hear from you and that is wonderful news!
Candy - I bet you are right that the vaccine might have had an impact. Happy you got it, and at least your anc is high enough to start! Pocket duty for you on March 22!
Jack5ie - pocket duty for you tomorrow ! I am bringing Girl Scout Cookies!
Lee64- Pocket duty for you on March 8th!
Rabbit - pocket duty for you in March, share the date if you feel like it:) I agree and understand your perspective. Stage IV cancer 24/7 , it's a heavy load. It's not fair. I was told my risk of recurrence was less than 10%, stage I....yet here I am, too - with all of you. It's a lot.
Wandering - I am so happy you posted and that Karenfizedbo15 was able to point you to another thread for assistance.
SondraF - I am sorry about your low blood counts:/ you and I started at about the same time and I was dropped down to 75 last cycle
PatMcG - you made me cry and laugh as well with your last post. You are a joy and I appreciate that you shared your childhood and coping mechanisms.
RK2020 - it's good to hear you are done with rads and have been vaccinated - I am sorry you had some rads side effects and I hope those have gone away.
CANCER 24/7. It is a lot. I am so relieved and happy (sounds trite) that so far (knock on wood) I have responded well to Ibrance/Faslodex and it's been better to tolerate than I had ever dreamed of when I was first given the devastating news in November of 2019. I am still bitterly disappointed in the fact that I had to fight to get my dx and was dismissed by my cancer center and primary care physician as having a virus when it was indeed my cancer that had come back and spread to lymph nodes in my neck and chest. I have had to accept it and focus on my current treatment and plans for the near future. I put special notes in the Christmas decor such as 'we bought this on our family trip to Germany in Heidelberg when the kids were 5 and 7" because often I feel like I am the keeper of memories. I feel good now so need to do some documentation while things are "good" . I don't think there is a day I don't think about my dx, perhaps because I have to remember when to take my Ibrance;) I would like to have only in my head that today is 3/2 vs today is day 23 - I know you all know what I mean! However, I am so thankful that I have a bit of a skip in my step and am enjoying the signs of springtime. Most importantly, I am eternally thankful for all of you because I feel there is no way that my in real life friends understand the surreal existence we have and how many stage IV cancer people exist.
Cancer 24/7 sucks.
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Aprilgirl1, I love what you just wrote. It is all just sooooo much, and like you I am grateful for this community - reading everyone's reality with this diagnosis helps ground me, gives me hope and great information, and helps me feel less scared. I mean, I'm still scared, don't get me wrong, but knowing you are all out there helps me breathe more fully.
And I'm getting the first dose of the covid vaccine next week, hallelujah ❤
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