Ibrance (Palbociclib)
Comments
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Laylea , congratulations! No change means you put the brakes on the cancer!
Good luck with the next one. Hugs from me
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I really hope the research on N-acetylcystein continues, and quickly. It looks promising, but needs more thorough vetting to assess the risk that "might" be involved.
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So glad to see some sober second thought on the issue of NAC. It’s too big a leap from these small exploratory studies to be making treatment recommendations. No one knows how it would react with Ibrance. Supplements can be dangerous and people need to be careful. I used to work with young handicapped children. I knew many who were harmed by supplements and a few who died. One died of gangrene after an injection that claimed to be curing his cancer. Jo
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Husband...I think your attitude is wise. None of us can afford to take risks. Personally, I wouldn't take anything that wasn't given to me or recommended to me by my oncologist.
Singlemom....how are you feeling now?
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Dear Joyner, Jaylea, Leapfrog, Pat, HLB, NKB, IntoLIght, SingleMom, Husband, Curious, Nonahope, Jayce, thank you very much for responding to my questions, and picture. Its all very comforting to know you are there and have had similar experiences. I am now in the lounge and café of the train station of my French city, having a croissant and café crème, waiting for the train to take me to Nantes, where I will pose as “journaliste” and review another (baroque) opera. I’m imagining you all sitting with me on this coloured circular booths. Anyone for a croissant ? Its raining cats and dogs. I’m on the beginning of the second cycle of Ibrance, and just had the two shots of faslodex yesterday, They made me feel weak and shaky, and heart beat very fast. I had to go to bed for three hours ! Today mild underground nausea, but manageable. Its good to be able to continue living, even if at a slowed t pace. Meanwhile I am worried about my 81 year old husband, who is my life, my consolation, my joy who has gone to the cardiologist today. I did not tell him, but reading his blood test I could see something is seriously wrong, and I have a hunch they will want to keep him over night. Lots going on ... This cancer makes love so much more urgent, no ? Can I get anyone a nother coffe ?
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Amarantha....Many hugs and prayers to both you and your DH, It's hard enough to take care of yourself and being a caretaker on top of things can really push that stress button.
I bet that croissant is nothing like the croissants here in the states! I'll have a couple...thank you very much!!Hope
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Dearest Amarantha, sending you love and hugs as you wait for news of your husband. I will be praying for you both tonight, from Australia xxx
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Amarantha - Yes, we must love fast and hard! I would be happy to sit with you in your cafe and have a croissant and creme. The opera sounds like great fun! Thinking of you today and hoping all goes well with your Dh.
Hugs and prayers,
Claudia
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A crossiant in a French cafe sounds dreamy. I hope all goes better than expected with your husband Amarantha. Thinking of you-
Thank you for asking Leapfrog. Feeling a tiny bit better but still not great. I followed up with my own primary doc yesterday. He heard rattling in my lungs so definitely thought pneumonia but x-ray was done and was negative. Sometimes I am not sure how reliable x-rays are as I had an x-ray two years ago when I had the trouble breathing and it said no concerns but then the cat scan found many nodules and enlarged node in lung with the cancer. My blood count is also very low so they contacted my oncologist and am waiting to hear about what to do with the Ibrance.
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Hi Amaranta. When I read the words cofee and croasant I couldn't resist to write.
Last summer i flew from Europe to the states and I have 10 hours in Paris. The best croasant and coffee in the word. I hope you feel better with the new treatment.
Hugs and blessi
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Hi Amarantha. I too would love to sit and have a coffee and creme with you, and listening to the opera. (Which one?) One of my favorite places is Villefrance which I visited on a Mediterranean cruise once, and I enjoyed a coffee and croissant sitting by the water. I have even looked into a vacation rental there but it is far too expensive!!! Of course I couldn't manage all of the steps now... I understand your fears with your husband and will pray the docs find an easy fix for his problem. I too am into loving hard and clinging tight. Enjoy the opera!
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Amarantha- I love coffee, croissants and opera and cafes in the rain. Just got back from Paris- and did a lot of that!
I get nausea for two days after the faslodex and I have found ginger tea and candied ginger to really help that.
Hope hubby is ok.
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Hello All,
I've been reading and following along to the best of my ability. I am on Ibrance and Faslodex. I take several OTC supplements and now I will reevaluate what I'm taking. Thanks for keeping me abreast of the updates.
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Before I forget, Patg, did you have testing/results on Monday?
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Amarantha, I have added your husband to my prayers. My hubby had a heart incident many years ago and had two stents installed. So far, so good after 16 or so years.
Jaylea, thanks for asking. I had the PET/CT yesterday and will get results Monday at my regular oncology visit. I could contact the nurse and get them earlier but have decided to wait. Crazy, huh? I guess I'm in the "no news is good news" mode this time!
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Amarantha, your posts are so descriptive I feel like I'm right there with you, dressed smartly (not in usual pj's). Prayers for quick diagnosis and treatment for your husband so he can return to taking good care of you.
Pat, I am really trying to find that centered place that takes things as they come. You're giving me inspiration.
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Three month scan results tomorrow. Nervous, excited, curious and nauseous all at the same time. Feel like the big I is doing something. The Doc said that many don’t see results til 6 month scan and not to get hopes up but sometimes it feels like hope is the one thing that keeps us going. So here’s to hope and may we all keep it up
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Hi Ladies,
Just finished my second cycle of Ibrance and been on faslodex since May... discouraged that my tumor marker went up again.. so onc is increasing to 125 mg. The thing is... I do feel better.. less coughing etc. Maybe one doesn't follow the other...
Amarntha.. you and your husband are in my thoughts...your descriptions are so lovely.. I can tell that you are a writer
PatgMc - I feel like you these days... not anxious to know everything right away... hopefully you're not feeling scanxious about it.. sending good vibes your way..
Txgatata- I keep asking my onc if we should do another scan... he says wait... hang in there..hugs
I'm 60 and have been with my significant other for 10 years .. he has been lecturing me lately about how I need to choose to live and wants me to do all these crazy vacations and see things that I'm not really interested in... my desire is to spend time being with friends, family... laughing and what you said Amarantha rings true for me.. love urgently ... perhaps he's afraid I'm giving up.. which is not the case at all.... I have specific priorities....hope I can make him understand
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Txgatata, I didn't see improvement until my second set of scans, so don't be discouraged if you don't see big results on the first scans. I was "stable" with the first (Pat McG assured me that I should celebrate that!) with improvement shown on the second set. Third set coming up in late December. Ibrance can take a while to work, as so many of us have found out. I worry more that some oncs are taking patients off of it too quickly and before it has a chance to work. Give it time, Frenchhorn, and fingers crossed for us all.
Good luck with your results, Txgatata and Pat, and Pat, I want to be you when I grow up! Always so calm and rational and so much fun. I'm sneaking up on 72, by the way.....:)
Amarantha, reserve a table for us in Paris or anywhere else in France of your choosing...we're all headed over for cafe creme and croissants and a big hug with you!! And we'll try to gussy a bit, too-
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Txgatata, my onc won't even do scans until after the 6th cycle, because she says we need to give it time to work before putting so much pressure on it to perform! So my first scan, post-Ibrance, will be in late January. I'm not even going to think about it until then...
PatgMc, keeping fingers crossed for good results for you on Monday! And Txgatata, hope your results are good as well!
Amarantha, I remember when we vacationed in Italy (we went in 2010), every morning in Venice we'd walk to a little trattoria and have a cornetto and dark chocolate for me, espresso for my husband. Thanks for reminding me of how wonderful that was! Driving to a Dunkin Donuts for a muffin doesn't quite have the same effect, LOL...
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PatG...Will be waiting to hear "good" results Monday from your scans!!
TX...I can remember feeling the same as you when I was on Ibrance/Letrozole and having that 3 month scan! Wishing you the best outcome.
Frenchhorn....I'm with you on not wanting to go on vacations and travel. Like you, I will treasure my family and friends for as long as I can. I've never been a "traveler", so why start now, at 74 years of age..LOL! One thing that has helped me to "stay focused" and not give up, is to do "something" every other day. Out and about 1 day and then a stay at home day -- even if my "outing" is just to drive to the gas station to fill up my car. It forces me to get up, get dressed and get moving doing something -- no matter how trivial.
JoynerL...I had thoughts of "wondering" if my onco took me off the Ibrance/Letrozole too soon...midway through my 5th cycle. But, my blood counts were going in every direction but the right direction - not just the WC. The decision was made when he found BC cells in my bone marrow. I have the utmost respect for him, so hopefully he made the right decision to move on to Taxol.
Hugs to all!
Hope
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Frenchhorn...I agree with you. We all have different priorities on how we want to live our lives and the way your significant other wants you to live sounds like that's what he thinks he'd do if he were in your position. Or perhaps he's afraid you're missing out on something you might regret one day, but my belief is that we all have to follow our own star and whatever it is that little voice inside us is telling us to do is what we should do. We can always change our mind if we choose to but I hope, also, that you can make him understand. And don't worry about your tumour marker going up. It's not necessarily something overly significant unless your oncologist thinks it is. Mine is high and it jumps up and down by 60 points at a time. Last cycle it had dropped from 510 to 450 and this cycle it's back up to 520 again. It's been doing that since May but my scans show stable disease.
I'm finding that living on my own, strangely, is very satisfying. I'm enjoying the peace and calm and being able to do what I want without someone telling me I should be doing something else. I love the silence and the fact that I can follow a trend of thought without it being interrupted and others always wanting my attention. I feel that I've done my bit. I worked very hard at my marriage and my husband took me for granted for forty years and gave very little back. I dedicated myself to him, brought our son up almost singlehandedly while my husband was a workaholic and social gadfly. So I think I deserve to have the lifestyle of my choice for a change. It's always been directed by him and I'm loving this.
PatMcG....Jaylea......I never ask for my scan results before my next scheduled visit either. I figure that if they have a concern with the result they'll call me about it so I just let it be. I've learnt not to look ahead and worry about what might happen but to live for the moment. Life is so much easier that way.
Txgatata.....I've been on Ibrance/Letrozole for almost a year and have had two scans with no change in my condition. So don't expect too much. Some of us will take longer than others. As long as my disease is described as stable I'm happy because my MO is happy with that.
With that, I'm off to bed. It's getting late in Australia and I was up at 4.45 am to get ready for my appointment today.
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Joyner.. thank you... I have time.
nonahope... I love it... fun to think.. every other day.. what is it that I want to do today... and the next day not feel guilty about staying home and reading, thinking and writing.. or just relaxing.
Leapfrog, thanks for the gift of your words...and support. What you say makes so much sense.... I know exactly what you're talking about... that voice inside.
Deep breaths...
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Nonahope. I totally agree with the not traveling thing, except as much as I have to to be with my family. Others mean well when they say " you should travel the world". Or, check off your bucket list. I found it so easy to prioritize my time. Mostly I focus on spending time with my grandchildren and going to their events. They are young, I want them to remember that I came to all their important events. None of us will live forever, and I'm not a spring chicken. Add Ibrance to the age thing and it's obvious, to me ,that I need to choose wisely. I choose to go to things that make me happy AND make a memory for my children and grandchildren.
Thanksgiving turned out to be all of the above. My husband's family lives in a small town in Oklahoma on about ten acres. It is three hours away, but my son drove. My son and his kids got to see about ten of their cousins and their aunt and uncle who live there. Perfect. They also got to ride horses, catch fish, sit on a Harley and pretend that an old horse walker was a ride at an amusement park. Oh, and chase chickens, ducks and geese. I soaked it all in, watching them, laughing with them and made sweet memories. I didn't feel great that day but that didn't stop me from being there. PTL
I have been reading the discussion about TM. My MO doesn't do them. She says she does not believe they are reliable. I'm kinda glad she doesn't, I think it would be another roller coaster ride for me. Scans are enough, I definitely have scanxiety for a few weeks prior to every scan. Mine isn't until January. It's five months between scans this time. Jan 5 will be my one year mark for Ibrance and Femara. I am in a far better place now than I was one year ago. November 30 was the day of the PET that showed mets like an explosion in my chest, lung and liver. That was a discouraging day, to say the very least. I do not want to relive that day or the month after, with all its uncertainty.
I'll take today and the progress I've made and move forward. I hope all of you can do the same. I love the month of December and hope we all get to enjoy it.
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Moving from chemo to Ibrance/Femara was a lift on my energy level. I did 4 days of hiking over the Thanksgiving weekend, with each day logged in more than 10,000 steps and 20 floors on Fitbit! So, I thought I was feeling great (after two weeks on IF) and I would beat the low neutrophil SE. Nope! The Monday blood test tanked at 0.886, the nurse pulled me off the Ibrance immediately and will decide weather to go back after a week rest and retest. This is my first cycle, not even a complete cycle!
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Cling,
Here's hoping you will be able to get back on Ibrance after a week. The white blood cells usually drop dramatically in the first few weeks of the first cycle-it's not unusual. I have also noticed that my white cells drop if I've had several days of vigorous activity-even if I was feeling great. I don't really understand it but maybe if you take it easy this week and eat foods that help white cells you will be fine. I can't remember the foods offhand-I think cantaloupe is one but google it and you'll get some suggestions. Best wishes!
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Cling- mine went far lower than that. I had my dose lowered after the first cycle. It still takes two weeks to bounce back to 1. This is the first time it is high enough to only have a one week break. If you look at Pfizer info about lowered white counts you will see how common it is. You may want to do that so you don’t get pulled off this med too early.
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Cling, I hate that for you. The 1.0 just seems so arbitrary. What if your number was .999? Did they ever hear of rounding? .886 rounds to .9 and .9 certainly rounds to 1.0. Where is the proof that below 1.0 results in infections? (Sorry. I just spend 30 minutes on the phone with my specialty pharmacy getting my new grant straightened out so I'm in that kind of mood.) I did have a discussion with my urologist recently about how UTIs are diagnosed with 100,000 parts per million of something, which I almost always have. He said that number was arbitrary and is not necessarily definitive. I don't think the 1.0 is either. Gotta get these providers to think outside the box.
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Grannax...What a wonderful Thanksgiving you had. Yes...I cherish every memory with my grandkids and family members.
Cling...I hope your break from the Ibrance yields good counts so you can continue.
Hope
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Ladies: Thanks for your encouragements. I will definitely back down from my daily 10,000 steps before next blood test (perfect excuse)! I have checked out on web for those foods (especially crabs, oysters, fresh tuna, salmon, etc.) that may help increasing neutrophils, and send the requests to my chef/DH.
I will also take Jaycee's position that the numbers should be rounded up! I am on Medicare and since the first bottle of Ibrance was given to me free from Onc's office, I have yet to learn how I will be able to afford this expensive med. I will leave it to my cancer center, it has good patient assistance service and it even has a special pharmacy in the center that supposedly will handle my Ibrance.
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