Ibrance (Palbociclib)
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Ann happy to hear that!!! And happy your pharmacy knows what to do
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Sf-Cakes , love the video ! Rabbit, in your pocket for scans or appt .
Ann-top- great news . It's a relief when there is financial assistance with Ibrance as it is spendy.
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Rabbit support sent
Tany
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Hello everyone. I hope you are all doing well. I've been having a tough time the last few months. I am no longer on Piqray because I progressed on it. I am now on Abraxane and I am tolerating it much better than the horrid Piqray. I just hope it works.
Miss Rabbit...I'm in your pocket.
Take care all. Missed you.
Jackie
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Great to see you Jacki. Hope Abraxane treats you well.0
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JACK5IE- Missed you. Thanks for checking in. I am no longer on Ibrance either. I am on a PARP, Lynparza. But good to see old faces/names so I visit this Thread a lot.
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Jackie so great to see you, I am sorry about rough months you had, best wishes for your new treatment. Please check in whenever you can. (((Hugsss)))
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Thanks ladies! You put a much needed smile on my face.
Candy...I hope your new treatment treats you well.
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JACK5IE - I’m sorry that Piqrsy was a bitch. I just finished watching a Dana Farber YouTube and the doctor in that video said Piqray can be pretty tough on the patient. 😢 I hope Abraxane kicks butt…cancer’s butt, not yours.
Rabbit - I know you usually go underground around scan time but know that I’m in your pocket. Hugs.
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Rabbit in your pocket with all the Go-Go’s and Bangles songs you can handle
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JACK5IE, great to hear from you, and I'm also sorry Piqray was both awful and didn't work. Dammit! That's the worst combination, terrible side effects AND ineffective. May abraxane treat you well, and do its job.
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Thanks so much SF-Cakes. I appreciate it
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Thank you all for the pocket duty
1 scan down - bone scan - just came home from it - was in the machine alittle over an hour - extra pictures to head and shoulders - eek. Nov 3rd is CT, Nov 4th is MO. The bone scan was rough, they are getting pretty painful to do now. I wish my place had those foam paddings to lay on that I've seen some other places have - they do my bone scan in the same machine they do nuclear heart scan thingies (how technical was that description?!) - that's what the lady in front of me was getting - what got me through the final stretch was Cakes' tale of her smile being visible on her bone scan and that I was the guilty party - that and my pseudo aprilgirl pumpkin roll and skyline chili waiting in the wings- bring on the onion breath!! Having all you ladies in my pocket makes a difference, knowing you all go through the same BS. Jackie, your appearance has made my day!!!! Woo!
So glad to see you! Here's to a good run on Abraxane - hoping its much much kinder than Piqray for you I'm here but underground. This is like my dozenth time doing all this but still - still as emotional every time. Will report back soon
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Oh god, Ill never forget the one bone scan I had - getting into that non-padded sling (it was such a deep tray somehow) with my sacral pain was definitely the toughest scan of them all. I hope all your scans turn out well, Rabbit!
Jack5ie, good to see you!
Had CT angiogram today for diep flap planning - they warned me it was more contrast than my usual scan (oh, and I had to fully undress and do the double gown thing) and they weren't joking. My gums tingled when they pushed it! But I got to go to the fancy new building again and was served tea in a china cup and a brownie after in the recovery area.
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Skyline can fix most anything ..Hope all is ok
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Good evening everyone! So some good news and some okay news. I had to do more blood work this week as both my WBC and RBC were low last week. This week’s blood work still shows them low but not too low to need extra time off from Ibrance or a dosage reduction. We checked my iron levels and they were good. The bone marrow tests also showed that they’re making new red blood cells. So that’s good! But I’ve been having a lot of pain around my ribs on the right. The pain hasn’t gotten any better after rest, ice/heat, or painkillers. So my MO has decided to order a PET scan. He thinks that a lesion on my right rib might be irritating a nerve bundle. Either way I want to know. So Monday I’ll call to schedule the scan.
Rabbit, glad you have one scan down! Hope you enjoy your chili
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To all on Ibrance
I was on 100 mg Verzenio for about 26 months but was swtiched to Ibrance due to GI symptoms that included malabsorption of nutrients. I started Ibrance 125 mg one week ago. The written instructions say take it at about the same time every day. How close to the same time is necessary? If I usually take it at 7 AM with breakfast but over sleep and don't take it until 8 AM is this OK? Or if I get up early and take it at 6 AM is this OK? What instruction have you been given about the schedule and timing? Thank you.
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WeninWI- I was on Ibrance for 4 years. I just changed to another treatment. Verzenio and Ibrance are sister drugs- both CDK 4/6 inhibitors- so they work similar. You have a window of a couple of hours each way--- 6am, 7am, 8am all ok. I would get up each morning at the same time--- I am a creature of habit. So I took my Ibrance at 7am when I ate my breakfast. But if I got up earlier one morning, or was late one morning, I still took it. So from 6am-8am was my breakfast and med time. That much time is not going to make a difference in the grand scheme of things. Especially if you keep it the same for the most part with just a few tweaks in the schedule.
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I take the Ibrance at night after dinner. The time I take it varies a great deal. However, I was told to take it at the same time each day for the simple reason of establishing a habit so I don't forget to take it. So I would not stress over the exact time each day. Best wishes!
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I, too, take mine in the morning - usually before I have my coffee. The time may vary an hour or two. Occasionally, if my morning routine is different, I'll forget, but then I just take it as soon as I remember. I don't think it makes a huge difference. I think they just don't want us taking it in the morning one day and then the evening the next day.
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Well it’s finally happened. I was supposed to start cycle 3 today but my WBC is too low. Not grade 4 but instead of rebounding during my off week it dropped even more. So I have to hold off for a week. No word on whether we’ll change the dosage yet. I know this happens frequently to people in their first few cycles but it’s just frustrating and disappointing. And because my counts are so low, I have to stay home from work until next week. Ugh…
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Katyblu - sorry about the blood counts. It does happen frequently but it is still frustrating, especially if it interferes with work - hope your employer is understanding (they should be!).
Jack5IE - I haven't said hello, yet - so great to see you! Hoping A is better for you than the piqray.
RRabbit - have been in your pocket for your scans and MO appt tomorrow. I am so sorry the bone scans are painful. It really seems like the hospital or cancer center should try to make us somewhat comfortable?? Hoping the scan today was not so bad and your appt is good.
WeninWI - welcome to Ibrance. I take mine at night, well after dinner. My oncology nurse seemed to really want me to take it at the same time every day so I do my best:)
Nothing to new to report . Work is busy, I just started week 3 of Ibrance so see my MO in 2 weeks. Hope everyone is doing as well as they can be and keep on keepin on!
edited to add: I tried to log on the bc.org a few times and got an error message. gremlins!
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Katy Lau,
I just got the news my WBC are low. What am I to do. I’m off Ibrance right now.
Tonight I feel a little sick kinda upset stomach but not throwing up
Any suggestions
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KatyBlu and Positive,
It stinks that low counts occur with Ibrance. My first MO had me take an extra week off quite often because my ANC hovered around .8, but said it didn’t worry her a bit to have 2 weeks off instead of 1. Eventually at about 1.5 years in, she thought it was time to lower the dose from 125 mg to 100 mg. It helped my ANC at first, but now at 2.5 years in they often go below the target of 1.0 for ANC. My current MO (first one retired) doesn’t hold my Ibrance even if it’s below 1.0, said she would at .5 but I haven’t gone that low. I was surprised about this but she said her thinking is that I don’t really get sick (knock on wood, lol) and feel pretty good. Hopefully your counts even out and your bodies adjust to the new meds. If not, your MO will get involved, I’m sure. Best wishes to you both!
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Katyblu - I’m sorry that your Ibrance downtime is impacting your ability to work but take this time to be good to your body. My ANC also declined after a week off of 125. And after a week off of 100. So my first 4 cycles wound up being 2 weeks on and 2 weeks off. The first time it happened, I was shocked. I didn’t know it was possible to decline further after taking a break. Well….it dang sure is possible. I may have already told you but even with my crazy Ibrance schedule, my first scan after 3 months showed either stable or diminishing mets.
Positive - I never got nauseated on Ibrance but I know some women do. But if you’re taking a break from Ibrance and you are still nauseated, maybe the cause is something other then Ibrance?
WenInWI - I first started taking it in the morning but eventually realized that taking it at night would be more consistent for me. I set my phone alarm and do not turn it off until I’m taking the pill. I can’t tell you how many times I’ve hit snooze because I was involved doing something else at the time it went off and by the time it went off the second time, I had already forgotten. So yes, I took it pretty consistently at the same time (give or take 15 minutes). At least Ibrance is only once a day. Im on Verzenio now and find taking Verzenio twice a day to be a pain. Good luck on Ibrance. It sure is kinder to the tummy.
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RK2020 and WeninWI - I also have to set my phone alarm! It's surprising how much I need to set alarms, haha! Setting my phone alarm does keep me consistent with taking Ibrance at somewhat of the same time every night. I also kept it in my purse when I started because it seemed like we were often out. With Covid, that is no longer an issue;)
Positive2Strong, I am sorry you feel nauseated. I have not had that side effect but I for sure had to hold Ibrance a few times due to low White Blood Count, specifically the ANC or neutrophils. I would think your MO would have you hold for a week and retest. Sometimes I like to correspond via MyChart so I have the directions in writing and can look back on them as often I will get the call when I am in my car or at work. I have had my dose reduced twice and am have been on 75 mg for at least 10 months. Like Rosie24, my MO allows me to start the next cycle on time with ANC below 1.0. My MO is ok for me to continue if my ANC is .8 or above but this is after almost 2 years on Ibrance.
Positve2Strong, what dose are you on? Don't feel worried if your MO lowers your dose. The first few cycles I had a hard time sleeping as I was just waiting for side effects to start AND I was still reeling/devastated from the entire stage IV dx. I know it is hard to imagine, but it does get better once you get useud to the meds and also after you have a scan to see if the meds are working. We all get scananxiety but it's important for us and the docs to know if tx is working or not. Please keep sharing - it really helped me to know I wasn't alone and hopefully, helps you, too.
RK2020, hope you are doing ok on Verzenio.
RRabbit - still in your pocket, it's pretty warm as lots of us are with you! I have classic M and M's as they "melt in your mouth, not in your hands";)
I had the hardest time yesterday and today logging in, for a while I thought my computer had a virus so I did a virus scan! It made me realize how much I love the discussion boards and all of you!
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I was wondering why I was so warm. It’s because we are all crammed into Rabbit’s pocket! Whose elbow is sticking me in the ribs? 😂
Aprilgirl - I didn’t start the lowest dose of Verzenio until I was completely healed from radiation and 150 x 2 dose of Verzenio. Taking 50 x 2 is like a non event. I feel very normal, which I’m grateful for but also wondering if this dose is doing anything since I’m not miserable. Lol. So after 14 days on 50 mg I saw my onc and had my blood labs. Since I felt well, I was anxious to increase my dose but my MO said my blood numbers weren’t as good as she had hoped. Considering that I was only on 50, they tanked quite a bit- mostly my WBC and ANC although most indicators dropped. So, we decided once more to take a bit of an unconventional approach. As of last Tuesday, I’m taking 50 mg in the am and 100 mg in the evening. We are going to do this regimen for 14 days and draw more blood. I’m hoping that my body just needs some time to adjust to V and my blood numbers will level off and the gastrointestinal SE remain manageable. I’d love to be able to amp up the dosage to 100 mg x 2. 🤞🏻
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ladies something happened I thought I’d post it here. Recent mri of c-t spine showed a good size abnormality in my lung, so chest scan recommended. I suppose to scan September but stupid insurance made 2 months delay.. anyway I managed to schedule scans tomorrow, see what scans show, anxiety meter is through the roof...
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Whew, Well ladies I'm here! I didn't know if bc.org would even let me on here today, it sorta did yesterday and it let me log in but I couldn't navigate after that. So frustrating. Still sort of hiccuping for me
Welp, I'll just get right to it and leave the details of the giant cluster it took to get this to point for a future post because I'm still a bit frazzled. The important thing to state is...STABLE MABLE
Cycle 25 at 100mg commenced a couple days ago. As Aprilgirl would say yellow caution light says I can proceed again. I still was a heaving mess on the floor with sloppy tears at the news but hey, we've all been there and I just gave myself permission to release the pent up flood gates so I can refill for the next go around. Oh joy! Thank you for the pocket duty, thought I'd check in before anyone overheated in there waiting so long!
I'll catch up on everything I missed pronto In the words of Kevin Bacon...
Pocket duty for you Snowdrop for scans tomorrow - we'll all switch pockets, all aboard!
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Oh Rabbit!!! What great news!
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