Ibrance (Palbociclib)
Comments
-
Tanya, when you check in at the cancer clinic desk tell them you will want a copy of your records before you leave. Or you could email and tell them ahead of time. If they need a little more time, at least get your oncologist to copy your pathology reports. They are right there in his hands as he talks to you.
I had XGeva every month for 32 months. We skipped May.
Love from PatGMc
0 -
hi philly - at the start of Ibrance I was both constipated snd had diarrhea on the off days😏 not the happiest times for sure! We all seem to have our weird ‘nesses’ don’t t we?! But as long as scans remain stable, no complaints from me!
0 -
Hey all. Well Sunday church service was very good---good music and preaching. And of course good food- fried chicken, ham, salads, deviled eggs, green beans, baked beans, and on and on. With a whole table of desserts also. I had a chance to visit with a lady that has moved away but came back for the days festivities. But the ongoing fatigue set in about 3 pm or so (after I got home). Like hitting a brick wall. I forced myself to not take a nap. By 8:30 I was in bed. That is what is upsetting. I didn't do any hard work. I wasn't in the kitchen with the other ladies rushing around getting things ready. I didn't stay after to help clean up. Back in the day, I would have been bustling around with all the others. And yet, I felt like I had put in a full day of work when I got home. Like I posted before, the way I physically feel makes the mental worse. And some days the mental aspect (thoughts I can't get away from) is worse than the physical. This is definitely not for the faint of heart. I just hate to start yet another drug. More side effects. I was going to see a counselor--had an appt set up. But found out that the first 2 visits would be $120.00 each with the rest of the visits being $35.00 each from then on-----insurance copays. I cannot afford that. I don't what I am going to do.
Today's plan-- visit with my sister and niece for a while. Looking forward to that.
Later.....
0 -
Candy, not being able to do what I used to do just six months ago gets me down too. Part of me somewhat enjoys the permission to be in the background and maybe even not having to do the dishes (love it). Another part of me really misses my old self that was in charge. I think I could muster up energy but the trouble is, I exhaust myself just trying to walk in a way that my hip and back don't hurt. That involves muscle tightness and sometimes it's just too much.
Add to that, For me the last 7-10 of my Ibrance cycle is my most fatigued I'm only into cycle two but I'm finding that the fatigue makes me weepy and sad. That first month I wondered if I was depressed. But then the week off came and I bounced right back to myself. I'm on day 11 of my second cycle and I'm feeling the tiredness coming. It starts about 4 PM one day and then the next day a little earlier and so on. Yesterday I put on my annual spring recital for my piano students. It was over by 6 PM and I just barely made it home. I totally hit the couch and hubby made a quick supper. I was asleep by nine pm. Piano recitals normally energize me. Not anymore apparently!
I have osteoporosis, arthritis, Paget's Disease AND cancer in my spine. Literally was at the Y in kickboxing class six months ago completely clueless. Running around with the grandkids clueless. Keeping the household running completely clueless. I just wrote in another thread somewhere I feel like a bowling ball just rolled through my body and knocked everything down. MRIs of my spine look a complete utter mess. Who knew that the little back pain I was having last fall would start such an avalanche! And now I am a bit of a different person and I do have trouble moving away from the idea that I might never be able to do a cardio class at the Y again. I may walk with a cane forever. I may not ever be out of pain from some bulging disc or compressed nerve or cancer. It's rough. I hear you!
0 -
Moonala, it's pretty early but maybe you should talk to your MO about lowering your dose of Ibrance. If you are on 125 mg, that could help. Maybe 100? Candy, I don't remember if you have lowered yours yet. Something to think about.
0 -
I'm afraid after this month, I'll be leaving Ibrance. I was feeling like it was my best , longest lasting chance for no progression. Has anybody known of anyone who did well on something else for a long time after Ibrance/Letrozole failed?
0 -
ladies...for what it's worth...I want to share what seems to be working well for me as far as exhaustion and fatigue are concerned ...
Because I'm on a clinical trial, testing the next generation ibrance, that features never before experienced severe SE, I was prescribed a low dose 8mg Ritalin to be taken twice a day...
I procrastinated taking it, because I don't like medications, and was worried about handling whatever SE would come with that drug.
Then today, I got really tired of the fatigue and zombie like mental state, and took the Ritalin as prescribed.
It works! I managed to perform a Marie Kondo to my 3 bedroom apartment and now, after taking the second dose I'm doing 3 loads of laundry in the basement of my building. Needless to say, I'm beside myself in happiness...It's the closest I've come, since diagnosis, to living the way it used to be...IF you decide to try it, I hope if works well also for you....
0 -
hi frisky,
it is good to hear that you are doing ok on the trial and that the ritalin is helping you with the fatigue. i am so impressed with your drive; 'marie kondoing' 3 rooms and 3 loads of laundry- i think you need a new superhero nickname.
i could hardly get out of bed when i was on 125 then 100mg of ibrance. i now take 75mg and still get fatigued enough to have a nap most afternoons on days 15-21.
long may you have the energy to live every day to as you wish.
0 -
Hi all! I don’t post her very often, but I am reading almost every day.
Is it possible to have SE from I/F after 1 year and a half, no SE? I have blisters in my mouth, no painful at all. Yesterday night they were mostly gone, but today they are back?
If someone has any ideas, I would appreciate your answers.
0 -
I just wanted to share my first PET/CT scan result since started Ibrance/anastrozole in late Feb- STABLE. My hip SUV uptake went from 4.8 down to 0.7.
I had lumpectomy, but margin was not clean, so SUV uptake is still 1.4 ( last Scan at diagnosis was 2.1).
With this result, i consider myself Oligometasis. Would you recomend any radiation or breast surgery at this time to bring me to NED?
Your thoughts & advices are much apreciated.
Thank you all for welcoming me to this board few months ago & helped answer my questions. I 'm reading everyday & still learning.
0 -
42young...you’re doing so well with the current therapy why mess it up with the SE of radiation in the vicinity of your heart?
I think you should just continue and see what happens next...best wishes of NED coming your way soon
0 -
janky, my friend’s brother in law (who had a different cancer) also dealt with both constipation and diarrhea and called it “consta-ria”.
I hear what some of you are saying about what we used to do vs now. It is tough, but I try to roll with the changes best I can. As jaycee recommends, it may be worth it to consider asking for dosage lowering if possible to combat fatigue.
elena, sorry to learn you will be moving on from Ibrance. Best wishes with your new treatment.
Frisky, I’ve heard it can be tough to get a doctor to prescribe ritalin, tho it is praised by many who use it.
Blueshine, I’m only finishing up round 2 of Ibrance so I cant speak on long term effects.
42 young, I go along with Frisky, stay the course you are on.
0 -
Ok, I broke the fifth metatarsal on my foot and have to have outpatient surgery to get a pin put in it. Will taking Ibrance affect this surgery in any way? Will they be concerned about my low white blood cell count? Any advice? Supposed to have the surgery Friday.
0 -
divine - I love consta-ria!! I am thinking you should chat with your Oncology office as they may want you to stop the Ibrance for a couple of days ahead and beyond the surgery, the darn low white counts are what 'do you in'...I wish you a quick healing. j
0 -
Divine,..you should check with your doctor, but if I were in your shoes, I would stop the ibrance immediately, because a-it's NOT going to make any difference if you're off for a while
B-it doesn't make sense to be exposed to potential infections especially in a hospital setting.
May the operation be painless and successful. May you recover quickly
0 -
Moomala--- Totally get it.
Jaycee- I am on 75mg dose. We started on 125mg as usually does. But soon switched to 75mg and been on that dose for almost the entire time on Ibrance.
Frisky-- Glad you are doing better. You worried me.
Blueshine--- From the way I understand it. Yes you can have SE's now that you never had before. We call it the Ibrance Dance. I had hair loss 1 year into Ibrance and now that has slowed down (thank goodness). Some have mouth sores that come and go, diarrhea that comes and goes, etc.
Divine--- Definitely check with your MO AND with the surgeon. The surgeon may want counts up before they cut on you.
Today fatigue not a problem. Go figure, hard to plan because I don't know when it will hit. Just saw Ibrance commercial with "Corey". "Some things have changed, but some haven't" says the commercial. Sh-t that is a lie. EVERYTHING has changed. Sorry ladies for the bad attitude.
0 -
Divine, I'm with the other Dancers....leave the Ibrance in the bottle for a while. You don't want to deal with an infection. I'm so sorry about your foot. It must be terribly painful. Toes can own you sometimes.
I love "consta-ria"! So funny!
42young, hooray on those scan results! Ibrance is definitely your drug! If I were you I would seriously consider getting a wider excision for clean margins in the breast. There also are some protocols for limited radiation after lumpectomies now and I would ask about one of those.
About me: I got results from the PET/CT today and I'm in pretty good shape. The places with uptake are either decreased or the same. I had a tiny bit of new uptake which is so small my oncologist thinks it's not cancer. (He doubted it so much he even looked to see which radiologist read the scan.) So I'm feeling good about staying on the current regimen of Ibrance/Arimidex/XGeva (32 months, so far!) and we agreed to scan again in 3 months. He's pretty excited about what he's learned about PARP Inhibitors so I'm happy to know what could possibly come next. Meanwhile, I'm giving myself the gift of an extra week off (or two or three or four).....Let's Dance!!
Love from PatGMc
0 -
Hello Ladies. Started Ibrance and Faslodex today. Fingers crossed for a long run.
All the best!
0 -
Woohoo Pat on the good scans!!!!! Let's Dance.
0 -
Movingsoccermom- Hear is to a long run !!!!!!
0 -
Quick question for you all. I have one more pill on cycle 3 of Ibrance. My cough has gotten worse. It is a dry cough and unproductive. Talking is a strain as it sets me in a coughing fit where I feel like I am gasping for air. If I don't talk or am not doing strenuous activity, breathing is fine. My question is would you take that last pill? Or would you toss it? MO appointment is Wednesday and she is aware of coughing.
Be back later to reread everyone's posts.
0 -
Holly, you have nothing to lose by tossing the pill and a good chance of starting to feel better. Go for it!
Movingsoccermom, welcome to our little dancing world where the MBC pioneers hang out! We look forward to seeing you get better and better! Call on us if we can help in any way.
Love from PatGMc
0 -
Candy, thank you. That makes me feel better. Frsky said the same, so i am not going to the doctor for checking. I trust you guys more than the doctor. The support and the knowledge here is amazing.
PatgMg, so happy for you that you are stable and in a good shape. Wish you many more years like that. Love and prayers to all
0 -
Congrats, Pat, great scans heading into summer!!!
0 -
Pat - thanks! I needed someone to side with me. Hubby said to take it. Of course he is not here with me (business trip). Congrats on your wonderful scan news! And yay for a next course of action/treatment with PARP inhibitors.
Moomala - I feel your pain. I feel like I have been jipped with the cards that were dealt.
Elena - would they move you to fulvestrant and ibrance instead? If they move you off of Ibrance, check back every so often and tell us how you are doing.
42 - great scan results. Do what you feel most comfortable. Of course you will want to weigh all options and side effects.
Divine - ouch! Yes, give up the ibrance for awhile. Definitely check in with your MO though.
Movingsoccermom - here's to a long run.
Frisky - hope you are doing better with the ritalin and the reduced dosage.
0 -
Divine, yes you need to stop the Ibrance as it interferes with cell production which is going to be accelerated due to the surgery. When I was considering recon, they wanted me off it for 10 days min. DIEP is a big surgery so I can understand. Would be helpful to discuss with your surgeon ( who is unlikely to know so I’d also suggest contacting pharmacist at specialty pharmacy or at Pfizer to get surgery recommendations and half life info
0 -
Thank you all for your thoughts & advices. I will discuss with my MO on next visit.
0 -
Divine the onc nurse told me that we’re not supposed to take ibrance during surgery and radiation. When I called my Onc he concurred.
Welcome movingsoccermom.
Holly chuck the pill or save it for later. I agree with Pat. I have some leftover pills from some side effect sickness days when my mind just wouldn’t let me. That’s after 2 years and dose adjustments.
Candy Corey is not us. I was in the gym doing Zumba and spin class, playing with my grandkids working a full and part time job 2 years ago. The truth is we make do with whatever strength we can muster and enjoy that piece of time. Sometimes we laugh and sometimes we cry but commercials aren’t allowed to show my sad shadowy anxiety filled body at the end of the day in a fetal position waiting for the ambien to take over.
Frisky thanks for Ritalin recommendation.
Tanya
0 -
I got my scan results via mychart. I see the MO tomorrow. It is not looking good. Shows two of my lymph nodes show progression - the one in my right supraclavical has gotten bigger. And there is one in my mediastinum that has gotten way bigger. There is evidence of pleural effusion and partial collapse of my left lung. The radiologist report says there is concern for pleural effusion malignancy. The main tumor is hard to discern if it has shrunk, as it is lobular or finger-like. So I don’t know what this means. I am a bit freaked out. I thought it was working. I know there is a PARP inhibitors, but I didn’t want to go to that so soon. I wanted this to work for years. Aaarg! Now I know why I have been coughing so much. But since I ditched the last pill, I have not been coughing as much. So hopefully it was because of Ibrance. I can’t even discuss this with husband because he is on a business trip. Sorry it is a me pos
0 -
Hollili202: My MO gave me some info on Fulvestrant and Alpelisib. It all depends on a biopsy I have to have tommorow to see if there's a mutation. I've really appreciated this forum the last two years I've been on Ibrance and wish you all well and a long run on it. Side effectsceere very tolerable for me. I will check in to see how you're all doing. Thanks!
0
