Ibrance (Palbociclib)
Comments
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Pat~ Julie is actually a pretty lady, and I do jog, but I also turn red like a tomato every ten minutes with awful heat flashes, and make up what's that? Lol. I have an incredible amount of hope , that's why I love seeing my pallative care doctor, because they have seen it all and they know when a patient is doing well or not. When she takes the time to tell me of those strong ladies that are 65 months out on This medicine, it makes me really positive and I know it's ok to battle my butt off because it is a great outlook compared to those dreary outdated stats. I have real life stats!! That's why I have always just liked my oncologist, he's Japanese, and he talks choppy, but so far has been wonderful with my treatment plans and help. He just isn't as warm as I would like. Or as talky as I would like him to be with me. I have broken him in enough to where he nick named me tank. So I've gained some smiles with him after all. But I need those positive doctors. All the way!! My pallative care doctor I love!! Just the fact that this medicine is working for so many women makes me feel positive and happy enough to keep trucking along! I still think Julie is a tad bit peppy. I don't roll over with a smile on my face. First I use my eye drops because when I open them and try to Move them it's like sand paper, they are so dry.Then I hobble out of my bed and gain my footing because of weakness from the Medicines combined. Then my hair looks like Bob king in the morning, so I would scare the camera crew! I think they better stick to Julie after all. No one wants to see a train wreck. Which is how i feel some days.!!! Power on you inspiring ladies! ~M ~
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Diannarose: congratulations for your sons graduation 👨🎓🎉
My youngest Ben just graduated High School last Saturday. I did take a moment to tick off that milestone to myself quietly. I wish that we all smash every milestone we have. And now my elder son is home from his sophomore year at U of Washington in Seattle. I'm settling down to a Summer of the boys being home and together and having a house full of 18/20 year olds.0 -
congratulations Diannarose on your sons graduation. You did it !
While reading your comments on Julie and the ads for Ibrance. Wouldn't be a hoot if we ladies filmed an ad ?
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JFV~Lol that would Be something. I would enjoy that! At least they would not see (portrayed by an actor) in the fine print on the bottom of the screen! Real women living real lives with MBC!! ~M~
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JFV, Yes on our ad! For my part I want to play a close-up of the "Julie" who throws up all over herself about once a month! (It just makes me appreciate the other 29 days when I don't!)
What will be the starring moment for the rest of you?!
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Scwilly, Congratulations on Ben's graduation and here's to all the future milestones you'll meet. I can't imagine how many groceries you'll need to fill up all those young men but have fun!
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JFV - thats a fantastic idea - our own SNL type skit!
I'll play Julie trying to get up in the morning with my poor 'ol stiff joints!
Patgmc: its like feeding locusts sometimes. I had 5 12/14 year olds once when the boys had their friends over from the UK. It took a few trips to Costco to feed them.
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Grannax2, I'm happy you have those normal days! I had one today and it was just great. My daughter, granddaughter and I had an evening out. My grand (13) and I were part of a charity art show and the opening reception was tonight. Then we celebrated at a local restaurant. I'm just on Day 3 of a new round and food still tastes pretty good so that was nice. We laughed until we were giddy and made good memories. I'm so thankful to be here for days like this. May all of you have at least one perfect day this week!
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Scwilly...yikes! 5 at those ages!
About those stiff joints, have you tried Turmeric from the health food store? I know this could all change tomorrow but I'm amazed at how much better my joints are with a daily dose. When I took an AI before, I had a terrible time with joint and ligament pain. Things are remarkably different now!
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Dianarose, congratulations! Enjoy your boys!!!
JVF, for me I would play Julie disappearing into the bathroom multiple times in an hour every morning afraid to step out until she was sure it was all over.
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airlinegal - over the moon about your scans. inflammation looks like cancer to pet, i have all kinds of lymph nodes popping up in one scan disappearing in the next. all inflammation. i'm glad they are being thorough ... but confident you are not seeing cancer in that lung.
JFV - Pfizer has a pretty straight forward dosing schedule and I would read up on it. If your doctors are not following it, ask way. Those of you who chat with me by private messaging know that I am the first one to jump the fence and do my own thing if it is justified, but that Pfizer dosing schedule/strategy basically makes sense to me. I am just quicker to lower the dose due to other side effects than neutropenia.
And if you are not getting off the couch, there is something wrong with your treatment. We need exercise to stay well ... I wont ran't about that here, but see the top of the Stage IV fitness thread for data on exercise and outcomes. A pretty basic exercise routine has the same effect on outcomes as a singe line of treatment ... so if any single line of treatment interferes with exercise they pretty much cancel out by my math.
You MUST tweak things until you are at least getting 20 minutes of exercise a day. I do think you can get there on Ibrance. Probably a lower dose, however.
Dianarose - so proud of you and your son. What an accomplishment! Those of us with kids HAVE to stay in the game, and I am so grateful for that.
Finished cycle 18. Getting into that period where it's 50/50 whether this stuff continues to work, but last scans were not bad and TMs are level. Not Julie peppy these days, but I did go mountain biking yesterday with DD1.
>Z<
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Z, I confidently predict that you'll be on the winning side of that 50/50 line!
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Scwilly- congratulations to Ben and to you!!!
You ladies are funny about us being in their commercial. Someone had posted recently about their Ibrance getting stuck and burpout what looked like smoke. That would be funny. A compression sleeve, some swollen ankles a bald head or two, some vomiting, sitting on the throne with some diarrhea or someone napping would throw a bit of realism in the ad. That was the problem with the one ad called the New Normal. There was nothing new in comparison to a life without this crap. The idea that people with metastatic bc would have to inform their oncologist about a treatment is scary. I would like to believe they would already know.
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Hi ladies. Diana so happy for you and your family. Ive been so sick. My commercial would show my jaw and neck swollen. Severe pain got a ct done on my neck but didnt wait on results. I called my dentist and begged him to see me again. He found an abcess and squeezed a bunch of nasty stuff out. Put me on antibiotics. Sending me to oral surgeon friday cause he isnt sure where the abcess is coming from. Xrrays are clear so either a tooth is dead or its the bone itself. Was suppose to start ibrance again tuesday but im too sick. Im seing my oncologist today. Ive miss all week if work. Worried about that. Hoping and praying fir good health for all of you. Hug
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Mel~ I am so sorry you are having problems with your jaw. I really hope it's just the stinking tooth and not the bone. I will send you cyber hugs and hope that the antibiotics kick that infection to the curb. Seems like an infection to me if they are pushing yucky stuff out of you!!! Poor girl. Rest up and drink lots of fluids. I sound like your mom. Lol but I only care!! Hugs ~M~
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Thanks Micmel. I really appreciate i
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I haven't seen the commercials yet. How do I find them? Should I just Google "New Normal"? Ha. Yes, we should make our own. I sure would not be Julie from what I've heard about her. LOL
I did find out about a free club membership called CARE. It's for cancer patients undergoing treatment.....that's us. My MO told me about it. It's for 16 weeks and it's in the facility near Presbyterian Dallas. I think they call it their cardio vascular rehab but they have created this new program in their updated facility. I will get a trainer and be monitored. They'll listen to my goals a create a program for me. I've been told they have everything there, including two pools. That's what I'm interested in...swimming laps. But, if I walk in and see a bunch of Barbies in there.....I will probably walk out. Ha
Wish me luck and courage. Believe me, I do not have a Barbie figure. My nick name is spud.... for a reason. I think you can picture my body type.
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My wife started ibrance / letrozole yesterday.
I did a little research on cytochrome p450 enzymes and ibrance / letrozole, and its potential for being interfered with by some common supplements.
Ibrance / Palbo: Cyp3a inhibitors make it stronger, as cyp3a pathway is used to degrade the drug. Recommendation is to reduce dosage to 75mg when using anything that reduces cy3a action.
Cyp3A4 strong inhibitors are to be avoided.
Letrozole: Cyp3A4 & Cyp2A6 catalyze it to active form. Avoid strong inhibitors of either. It itself is a strong inhibitor of cyp2A6, weak inhibitor of cyp2c19.
Green tea: Inhibits cyp1A2, cyp2A9 , cyp3A4. Therefore to be avoided with ibrance / palbo
Curcumin / tumeric: inhibits cyp3A, cyp2C9. Therefore best to be avoided with ibrance / palbo to be cautious. As a side note: It isn't known as a strong inhibitor, and some (Constantin Kaniklidis) consider it safe with letrozole.
Oil of Oregano: potent inhibitor of cyp2C9, cyp3A4. Must be avoided if using letrozole or palbo.
Garlic: No significant influence on Cyp1A2, Cyp2D6 or Cyp3A4
moderate influence on Cyp2E1. Likely safe with most drugs, other than warfarin, due to platelet inhibition.
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Blood work was good enough to start cycle 4 today. Seems to go by quick.
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Grannax2, I do wish you luck and hope your experience with the new program will be wonderful. The prospect of yanking myself into a swimsuit for public consumption makes me want to lie down!
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melmcbee, I'm so sad to hear of your problems with the abcess. I had one in 1969 and I still remember how miserable it was. I pray that your meds work well and you get everything taken care of quickly. I'm so sorry you have the extra stress of missing work which just adds a whole other level to being miserable. Is it possible that your co-workers could donate paid-time-off hours to a bank for you? We often did that where I worked. Perhaps a friend could bring that to HR's attention? I'm here in Memphis praying for you, friend.
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Thanks Pat. I have some pto hours i just stress about my coworkers and job security.
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Thanks for the info, concerned husband! You seem to be a research wiz, we like those around here. Let us know if you can dig up any information about any good treatments coming down the pike!
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melt - so sorry about your abcess, hope you feel better soon. Winging special prayers your way.
JVF - I want to be Julie who walks the dog a few steps and then sits down and cries because she can't go another step and has to call dh to pick them up. That has really happened to me.
Hugs and prayers everyone!
C
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Just get my first scan results after three cycles. Every cancer found on my original diagnostic scans are reduced on the new scans. One lymph node in my chest went from 2.3 x.2.5 to 1.6 x 1.1 cm. The original tumor in my right breast went from 3.0 x 3.0 to 2.5 x 2.5 cm and the large area of tumor versus possible pneumonia in my left upper lung is totally resolved, which means it was all pneumonia and no cancer at all. There are multiple nodules in the lower lungs and all are smaller, with the largest going from 9 x 8 mm to 5 x 6 mm.
My main complaint has been fatigue, but when I started the cycles, I decided to give myself three months to self indulge, see what happens. Now that I have documented reduction, it's time to start planning a diet and exercise plan to help my body get whole faster. You see, I was full of so much doubt about this combination working, I needed to see proof before I could believe it would help me. Now that I see it, I can see my "new normal" getting a makeover and deciding I will live with cancer instead of dying from it.
I took my daughter to the pool on Sunday and we had such a good time. Now I wish I didn't have to work so we could do together things all the time! I'm so happy I decided to take this route! I hope the ones just getting started on their Ibrance journey have the same good results or even better!
Carol
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Alabama, yahoo! I am so excited to see another success story. We are all pulling for you.
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Alabama, that is some wonderful news! Especially after just 3 cycles! One of these days you'll be posting on here that you have no evidence of disease and we look forward to celebrating with you! Have fun with your daughter and spend the summer without worrying!
Love from Pat (raised in Birmingham)
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Melmcbee- I had a bad toothache recently and even though the x-ray seemed clear, the oral surgeon said it was a cracked root so I had a root amputation (tooth has 3 roots now it has 2). Since healing is compromised with chemo I waited two extra weeks before starting Ibrance again (it was a 3 weeks off instead of one). Get yourself checked for osteonecrosis if you are taking any bone strengtheners (Zometa, Aredia, fosomax), it's one of the side effects.
Husband11- thanks for the detailed information on supplements. Looks like I'll cut down on my green tea. I've been craving simple black tea lately, hope that is okay. Since you seem to be good at checking out complex information I have a question about what kind of food is best to have while taking ibrance. If you read the sheet that comes with the pills I believe it says foods high in fat help the effectiveness of the medication when taken together. Let me know what you think. thanks.
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Alabama- so happy for you! Love to see good news
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Alabama, wonderful news for you and your family....keep it up and get to the pool more often!
Husband, thanks for the data. Please keep researching and sharing with us!
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