Ibrance (Palbociclib)
Comments
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Picked up my prize and ribbons last night0 -
Pat, I'm proud to know you...both for your incredible artwork (and that gallery is amazing) and for your willingness to get up and belt out that song! Wish we all could have heard it! By the way, my aunt used to call her sensible shoes her "ground-grippers".......
Praying for Dani today, Mom, and for Lita and Dianarose, and for us all-
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Good morning..
What a pleasant morning to hop on board and see Pat's photo at the luncheon. You are just amazing!!!!! And, then to see Dianarose's 2nd place ribbons....you gals are just great beyond words.
I'm still waiting for the results for the lab work my nephrologist had me do last Thursday. I am a nervous wreck, so please keep me in your thoughts and prayers.
Off to have my car serviced. Have a wonderful day, ladies!
Hope
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Thumbs up for Dianarose and Pat. You both give us hope and joy to live life to the fullest....in spite of the SE. For those, too, who give us as much knowledge and research. I feel very fortunate to have these posts to read. It helps so much to know we have MBC sisters who care. Thank you.0
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Dianarose - That is wonderful! I bet those muffins are great! Baking is good for the soul, but not good for the waist. I have given it up for that reason. I used to love too cook and bake. I need to get back to that. I'm glad you are feeling better!
Gracie - it is truly wonderful to see you back and hear about how much better you are feeling! We were all so worried. You are in my thoughts today as you have your scans!
Nona - I am praying for you today also!
Happy Monday everyone!
Hugs and prayers
Claudia
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Hi Cure-ious I see that atezolizumab alone was effective on a subset of very late stage TNBC patients but there is only one trial I can find that accepts hormone receptor positive patients. They do seem to combine it with a bunch of stuff ....
Safety and Pharmacokinetics of Atezolizumab Combination Treatments in Participants With HER2-Positive and HER2-Negative Breast Cancer
I am hoping I can hold out long enough for faslodex and abemaciclib at least, even if I can't combine it with PI3K inhibition . As far as immunotherapy ... hoping to get that soon.
>Z<
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Romansma, I haven't been on this thread for quite a while. I'm wondering how you're going with the combination of Ibrance and Femara. I started on that treatment about a month before you. Would you like to share your test results? I'm participating in a trial in Australia of that drug combo and have a test every four weeks after the one week break but every cycle my white cells and other levels are too low to start the new cycle and I need an extra week's break, so I'm taking Femara every day and Ibrance for three weeks with two weeks off each cycle. Even after the two week break my neutrophil count was only 1.19 last time so I just scraped in to continue with the 125 mgm tablet! I have grade 3 neutropenia and become very fatigued by the end of the three weeks with Ibrance. But I'm quite happy as I have nearly two weeks per cycle of feeling relatively good, evoking a memory of how I used to be when I was well
So far the extensive bone mets are no worse but they're no better. My oncologist describes my disease as "stable" which is good. I was disappointed, I must admit, that the CT scan didn't show any regression of the tumours but I'm an optimist and I picture those horrible little cells huddling in a corner, shaking in fear because they know their time chomping away in my bones is coming to an end! I'd love to hear from you and anyone else who's on this combo. Hugs to all, sending love and prayers xxx0 -
Leapfrog...I'm on the same combo. I'm just finishing my 2nd round and this is my week off the Ibrance. I am on the 125 mg. and will continue on that dosage for round 3. I haven't had any scans yet. My onco said I would have "head to toe" scans every 3 months. So, I'm very nervous and like you hoping those little cells are huddling in the corner.
Hope
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Hi Leapfrog! I have been on that combo for 2 years. I love your cancer cells description! I have always said mine are like bullies, they act all mean and threatening, then when treatment starts, they tuck their tails between their legs and run! Stable is great! Give the combo more time, hopefully it will start munching away at those tumors. So many of us have had our tumors shrink! I am praying you will be one also!
Hugs and prayers everyone
Claudia
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Hi LeapFrog, I have been on the same combo since June 2016. It took me about 6 months to see a real positive outcome. I hover around the lowest neutrophil mark all of the time but soldier on. Hang in there if you can. We are all pulling for you!
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Welcome and hello to leapfrog and the other newbies on this thread. I was waiting for someone else to address this but I guess it has to be me as I've been around for a long time. Hope Romansma who started this thread passed away many months ago, can't remember exactly when, but she was a true pioneer and we are all grateful to her for being such a warrior in this fight against MBC. There has been discussion about starting a new thread to avoid this confusion but thoughts were we should keep it as is in her honor.
I started Ibrance in January of 2016 and have done very well as my cancer was reduced now appears to be stable. I'm currently taking a break from Ibrance (rd. #20) because I had an episode of passing out and my MO thinks my body needs a chance to recover a bit. We are taking a trip to Italy in a few weeks and I will be off Ibrance until after our return and then I'm not sure what he will decide to do. If cancer is stable, I may just use letrozole for awhile longer and then start back on Ibrance if there is progression.
I'm sorry to give you the news of Hope's passing but I just thought a lot of new people may not know that and needed to know. It's painful to some of us old timers to be reminded of her passing.
Hope everyone does well on this combo for a long, long time.
Hugs and prayers,
Faith (in the future).
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I have been on Faslodex/Ibrance -on my 3rd cycle currently. My first cycle was 125 mg, but after 2 weeks my ANC was <6 so they waited and after 2 weeks it was only .8 so I waited another week and it was 1.6 and i was decreased to 100 mg. With the 100 mg I did get through the 3 week cycle, but, had to wait 2 weeks to get back to the requisite ANC of 1.0 to start a new cycle. I don't know if I can't tolerate the 125 mg because I have bone marrow mets as well or some other reason.
I have a follow up PET scan on September 8, so will see if stable or not. My tumor markers are extremely high (7000 range) but did come down about 10% after the first cycle.
Faith-840- I did have a question about members passing away-how is one to know if someone has passed away? If you look at the date they were last seen, it could mean they don't go on this site anymore, but are doing well in life.
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Nkb, you have a very legitimate question and it was just addressed by the moderators. They informed me that they have made a note about Hope's passing to the bottom of the post. Going forward, I wonder if those of us posting can inform the moderators about this when we know someone had passed away who actually started the post they are replying to.
Note to the moderators, is it possible to somehow flag a person's post when we hear of their death? Maybe with an "in memorial" beside their name?
I'm not sure, how do others here feel about that? Maybe it's too painful to be reminded of how many we are loosing to this dreadful disease.
Faith (in the future).
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Hi Faith, and all,
In fact we have been brainstorming for a while about how to address the issue of members who have passed, and how to signify their profile/photo to reflect this. We have not yet come up with a concrete solution, so we welcome your suggestions. This feature is one of many we are planning to implement at some point in the near future.
It would be helpful if we learn of a member's passing to get a notification about a popular thread that should be updated to note the passing. Please feel free to alert us as necessary.
Thank you all!
--The Mods
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There are folks, like myself who would NOT like my passing to be broadcast. There has been a discussion on this previously in another thread. Just because someone has died, doesn't mean everyone has to know. Depends on the wishes of those that have passed.
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Does anyone have additional information about this new clinical trial? Sounds like an interesting development toward immunotherapy treatment in combination with a second drug. I don't know anything about either.
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just wondering how many people active on this thread are still working. Full or part time and occupation I'm 1/2 way through my first round. plan on returning to my job and RN in peditric ER I'll be doing 8 hour shifts instead of 12. Part time. Going stir crazy at home.
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Hildegunn, I continued to work full-time for 8 months (I am a college professor.) Then at the semester break, I started using up all of my vacation and sick time working only a few hours a day until it ran out. I then retired (I am 64). I live in California and was then able to go on state disability. I do not have enough energy now to work even teaching online. I also find I do not deal well with any stress anymore. Everyone is different and I cannot help but imagine that being younger would help. I loved my job and would continue if I could, but my age and situation allowed me to retire. My husband still works and I am able to continue on his insurance so that also helped my decision. Every situation is different. Do not feel guilty to decide either way. Take care of yourself and enjoy life as you wish.
Chris
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Hildegunn, I'm also a nurse and was able to work for 2 years after diagnosis. The physical part of the job just got to be too much. My onc does not want me to lift or pull on patients and that's impossible.i went on short term disability in June and will most likely go onto long term disability next. It's a huge financial hit but believe me when I tell you that I feel SO much better since I stopped working! It's a very hard and personal decision.
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Hildegunn. Im work at hospital in xray/ct and deal with all patients. I work 8 hour days and Im extra cautious about watching my bloodwork and use neutropenic precautions. Ive only completed 2 cycles because of a mouth infection that had nothing to do with my patients Healing hugs
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May I offer an opinion on whether to announce the deaths of people on this thread?
Since this is often the first place people seek information about Ibrance, we find them at their most vulnerable. They know only too well that people can die from MBC. I believe they come here looking for hope, anxious to see that people can survive and live somewhat normal lives on our medicine and many here are proving that's possible.
I wonder if there is or can be a specific place on BCO where one could go and read memorials if they desire.
We will all remain survivors as long as one person remembers us. Every kind thing we do is lasting. Each time we reach out a healing hand to another, it will count long after we're gone. I'd love to just think of all of you living through your comments.
JMO,
Pat
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Hildegunn,
I was diagnosed in January and other than a few weeks at the start, have continued to work full time. While I work an office job, I am in senior management for government and, as a result, it is often very stressful. The issue of whether to continue to work or not is the one thing that keeps me up at night. I'm only 55 and really like working (and when I was off for a few weeks thought I was going to lose my mind!) but also don't want to do anything to jeopardize my health. The trick is finding a way for me to create boundaries. In the past I have worked very long hours, responding to issues at all times of the day or night. Clearly that is not sustainable now.
Other than the stress, I have not found it that hard to keep working. There have been some challenging times - I was quite ill for about six weeks dealing with a lung infection. Overall it's been doable. My strategy going forward is to just take one day at a time. If things progress, I will revisit this decision, perhaps reducing the number of days a week that I work. I do know I will be very annoyed if I keep working and things go quickly! I fully intend to have a period of time when I can enjoy my life. It's all a matter of timing.
Pat, I love the sentiment behind your statement that we are all survivors if someone remembers us. You have expressed this so beautifully. I particularly appreciate it as I am not fortunate to have a large family or a significant other but do what I can to make my mark on the world. Thank you!
Pat2
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I also agree with you Pat. I'm newly diagnosed with stage IV de novo and came to this site looking for hope. I don't even go to the end of life thread. I read everyones history looking for someones dx that is like mine. Wanting to not live in fear. That's why I'm looking forward to returning to work to do what I do well, helping others. I can say the cancer dx got me out of the 12 hours shift work that after nearly 30 years I'm glad for reason to reduce my hours.
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To all of you incredible women!
I'm impressed with those of you who continue to work and those who have chosen to be at home. I miss my work but I'm thankful to feel passionate about making art, keeping my mind busy. Those of you who go stir-crazy at home might want to think about buying some simple art supplies and dabbling a bit. Once I gave up thinking I had to please others or paint the Sistine Chapel, I started having fun! There are online classes which you can do at your own speed or you can just play. Either way is good for you!
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Patg - well said! Joynerl - that is a very interesting article! Thanks!
Claudia
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Absolutely Pat. It's all about being prepared. In January, I was NOT prepared! My leisure time is typically spent working on my old house and gardening. I had no lung capacity so renovations were out of the question and gardening in the middle of winter is a tad challenging, even here in Lotus Land (as most - jealous - Canadians refer to Victoria). I couldn't concentrate on reading so, beyond spending time on BCO, there was not a lot to do to take my mind off my troubles. There is only so much time you can spend on Candy Crush!
With a bit of prep, I can think of dozens of activities that I would love to pursue. My head is in a better space and I'm trying to modify my home to make it more conducive to relaxation and generally taking it easy on the days when things are not going that well.
But for now, my short term prognosis is positive. I'm dealing with a few ongoing issues with my lung and there are some questions regarding progression and treatment regimens but I do believe we will get a handle on all this. I feel pretty good now that the infection is behind me so the thought of telling anyone I can't work just seems wrong (mind you, I've always been the sort to just push through when I feel unwell). One day at a time! At least when the time comes I have excellent benefits so I think I should be able to manage.
Thanks again for all your encouragement and kind words, not just for me but for all who find themselves here. You continue to be an inspiration.
Pat2
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I've cultivated work that is flexible and doesn't generally require me to be at any one place at a particular time. My latest effort was to buy a foreclosed home, renovate it and run it as a vacation rental. It was complicated hard work but the schedule was mine and no one depended on me. Now that it is operating, someone else cleans. I deal with property management when I can, marketing and managing guests. Most of that I can do online from my bed, which is how things are going today. For me, any job where other people count on my performance on deadline is not an option. I find I can serve on boards, manage (passive) investments etc. That's important to me, mentally.
My old job was managing a company of 100 employees, I vaguely recall having the mental capacity for that ... but now I struggle to get through the family to do list both mentally and physically. Today was busy with many family tasks accomplished but by the end of the day I was exhausted and broke into tears trying to get myself and my daughter dinner. The take out pho got a little complicated. For some reason they gave us uncooked noodles which freaked my daughter out ... it looked to her like there would be no dinner. Calming her down, figuring out how to cook raw rice noodles ... I was shaking with exhaustion and stress.
The challenge for me is that what I am capable of changes day to day. I can't predict it. I can't reliably rely on myself and I can barely keep it together for my kids much less a job. Shakes my identity, but the work that I have been able to find for myself builds it back up. So work is important to me, but I have to choose things I can do well.
>Z<
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Has anyone ever been taken off Ibrance and then put on again? I was so sick from our well water at the time my MO took me off for almost three weeks then I had progression. Having my 4th and last A/C on Friday and then I have no idea what.
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Pat2, I think it does get back to the old cliche of taking one day at a time. I found myself feeling anxious about a dinner invitation we got for September 11 which will find me two weeks in on the Ibrance. I struggle with making plans that involve others when the days are unpredictable. One thing I wish is that I could just mark a calendar with the best days. Yesterday on Day 1 I was nauseated most of the day. Today I feel great. I do find I'm better when I have plans to get out but throwing up at Ann Taylor Thursday shook my confidence a bit, I have to admit!
V, you remodeled a house?! I've had one bathroom without a vanity/sink since 2012 when the cancer metastasized the first time! Thank goodness, it's upstairs and I have no real motivation to go up there! I have the wallpaper partially removed from the Master Bath and every time I think about jumping in to finish it, I laugh! We've decided to hire a contractor to tear the whole thing out one of these days. (Z, are you available for a little trip to Memphis?!)
Hildegunn, I'm glad you stopped the 12 hour shifts. When we did fundraising galas I used to work 12 hour days for about a week in preparation; then I would just collapse. I don't see how you and others did that routinely. Amazing!
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Going back to work is an extremely complicated decision for many people. I agonized for months about it. I had a very demanding job- even part time it included 12 hour days and eating lunch at my desk. I loved it, but, it wasn't the kind of job that you could have a bad day at. I wasn't given a great prognosis for longevity at the time and my DH was already retired and I had benefits through him so I didn't have to worry about that. If someone had said you won't progress for 5 years, I would have gone back to work-. It was gut wrenching not to work and I missed earning my own money. My kids were in college at the time so no dinner obligations.
My mother also died while I was in treatment which took me a long time to make it through the day without crying. My MO also retired at that time, at 60 saying that he wanted to have another life outside of medicine before he died, he wanted me to also.
Hopefully the right decision will present itself. Take care of yourself.
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