Ibrance (Palbociclib)
Comments
-
Thanks everyone. I promise to post any pics or videos. I wonder what my new designer gown will look like. I know there is a press release but no one said anything about billboard. Ha.
0 -
Hi - I went to the optician yesterday for my annual exam. The guy was peering into my right eye with the flashlight for an extended period of time. So he tells me that my optic nerve appears to 'blurred but not elevated' which suggests inflammation. He recommended that I see an opthomologist to have it checked/. He felt it was caused by my 'cancer meds'. - anyone have this side effect?
I was really hoping I could add one more doctor to my medical team and have one more appointment to schedule my work life around!
0 -
Into Light, gorgeous babies!! Are they all siblings or from a mixture of your children!
Brenda, I am astonished that you walked TO the grocery store and then back with GROCERIES!
Happy Thanksgiving to all!
0 -
Into light- Your grands are adorable! They do bring such joy.
Lauren- Yep...the eyes have been wonky although we don’t know if it was caused by meds or by cancer changes. For me it could easily be age related. Oh the joy:-
Grannax- congratulations on the modeling event in NYC! Hope you will have some time to enjoy the city while you're there.
Hope everyone in the US enjoys Thanksgiving with friends, family, or a day of peace and quiet!
Brenda- you may want to enter your workout in the fitness thread
0 -
Hey all. I have been busy this weekend and just now getting caught up on all the posts. Way to go Grannax !!!! I showed the you tube video of you to my sister. She asked where you were and I couldn't remember without combing through all the posts. So where was the first event held?? And now to NYC---woohoo !!!! I will be waiting to see pics of your gown, hear of all the preparations, and see all the pics.
I love this thread and it is my go-to thread because it is so active and so much good info----thanks Cure-ious and all who post about research and latest advancements. We have some very smart cookies on here that keep their finger on the pulse of MBC.
So, I don't want to be a downer, but I just posted over on the VENT ABOUT LONG TERM TREATMENT thread and I wanted to copy and paste to here since this is such a busy thread and very knowledgeable. Hope that is ok. Here goes...
I wanted to post something that has been rolling around in my head, but I didn't know which thread to post it. So here goes....
Do any of you feel this way???
I was talking with a friend this weekend and he said " I cannot believe you have cancer. You are still working. You still attend church ( we attend the same church ). You look healthy"---he meant not grey, skinny, frail. And really I feel pretty good overall, I guess. I have fatigue and pain, but it is doable so far. I am still up and around and living life. So I started thinking. We are told that these meds are slowing the cancer. There is no cure. This will eventually be terminal. And then I think-- how will it progress? When? I don't feel terminal yet.
Is there a "normal" way this goes??? Does the liver tumor start growing bigger, since we know it is in the liver and we watch the liver every 3 months with CT?? Will the cancer spread to other areas not effected yet?? Will I one day have a seizure or can't talk and know it has spread to the brain, will I have trouble breathing and know it has spread to the lungs, will I have GI problems and it has spread to the GI tract??
Those with progression on here--How does it progress?? How does it eventually kill us??
Will I live 1 more year, or like some have posted, 10 years?? Or more. No one knows. So just waiting for the other shoe to drop and never knowing when it will happen.
What should I expect to happen with MBC???
I need to have this conversation with my MO, but as you all know our doc appointments are limited and I have other things to discuss when I see my MO.
Thoughts...….
0 -
Any ideas on what to do about thinning hair (no pills please).
0 -
Oh, Candy....I feel exactly the same way. I'm a planner, and I wish that I could know what and when to anticipate. But apparently, we cannot.
Do any of you who are doing well on Ibrance start to get depressed as you get further into the cycles? I have felt so normal so far and since diagnosis of MBC in Feb 2017 (for which I am enormously grateful) that I find in cycle 23, I'm starting to get anxious about how long this "good period" will continue. And suddenly, it seems that everything (hip joint and mastectomy site from 1991) have started to hurt. The list included my neck and left shoulder last week, but they seem to have straightened themselves out. I don't know whether I'm being paranoid/making a mountain out of miscellaneous normal muscle pains, or not.
I hate this, and I hate being a wimp. Some of you have a more difficult situation than I, at least for now, and I hate being a sissy. I fear that any day, I could be back to the terror at diagnosis 22 months ago, assuming at diagnosis that death was imminent. I've been dancing along like Little Mary Sunshine until recently, but the clouds on the horizon are starting to scare me.
Shit. And please excuse me.
Thanksgiving hugs to all and prayers for good health and peace of mind over the holidays and into the future.
0 -
Candy and Joyneri: I have those same feelings after being on Ibrance since May 2017. Wondering when it will fail. There just doesn't seem to be much on the Horizon for this type of cancer., as far as immunotherapy. I also am told how well I'm doing but wonder about the other shoe dropping. But I am grateful for how the past two years have gone. I really appreciate all your posts.
0 -
Eye stuff-yes, cataract surgery times two and a new condition no one mentioned CAUSED by the surgeries. New eye drops. New floaters. New head-achy feeling behind eyes. New glasses coming soon. I hope they fix all of that. Yeah, right. And yes, I think the cancer meds are involved.
Joyner and others, I feel all that stress from the waiting for the other shoe to drop. I keep telling myself enjoy NOW. But I know it is hard. And I think the stress causes the random aches and pains we feel.
I may have just fixed another stress causing stomach-in-a-knot item. I think I have new funding for Ibrance co-pays from an organization called "Advocate My Meds." I Googled Pfizer patient assistance and followed a very long and convoluted trail of web sites and phone numbers. Spent most of a day on the phone. VERY stressful. I checked with the money person at MO's office and she said they are legit. I got the process started yesterday and already received emails from them and yet another phone call. I will pay $49.95 (I know, it sounds like a blue light special at K-Mart) a month and it will last for a year and I can renew for another year. My drug insurance is not involved at all. I can provide phone numbers, etc. if anyone is interested. They are actually part of something called RxSolutions which their website says supports drug companies. They make it clear on their website that they are there to improve big pharma's bottom line (using those exact words). So I have not gotten soft on Pfizer but will take advantage of what they offer. Yes, this comes from Pfizer. It's just hard to tell who is scratching whose back, how, and when.
0 -
Thanks SO much, Janet, and good luck with the eyes, too.
0 -
hi everyone!
Thank you all for your words of encouragement and love and support!!
I am going to take another walk today. Just feeling quite “blah” over here! But that’s okay!!! It’s okay to rest and relax!! I know this deep down!!
And I can relate to the anxiety around the what if’s when Ibrance stops working. I think through these things a lot, and try to talk it over with my MO and family and friends who I trust. I often feel like while I’m trying to not place my life on hold...and just love and live...it is difficult to plan ahead for the future when it could be what, 1 year, 2 years, 5 years, 10 years?? Maybe more??? I feel like my emotions have both incredibly deepened due to this diagnosis as well as have stunted somewhat. And I flipflop a lot between the two.
I want to go down in herstory with some kind of torch that I lit to pave a path to help others. But then I know that’s also all my ego. I have an inner conflict with myself constantly around acceptance and not accepting this diagnosis.
I think there’s also a huge piece of PTSD that comes with this diagnosis and it, for me, creates difficulty and a freezing up, to know it is safe to keep moving ahead like everything is as normal as possible.
Sending everyone a hug today. Lov
0 -
Candy. It was in Dallas. I live in suburb of Dallas in Garland, just east of Dallas. I'm a newbie to Say Yes to Hope non profit organization. The survivors I've met are all so nice. I have a new group of friends. There's a retreat in December. It's in East Texas in Canton. That's where the Founder lives. I hope I get to go. It's less than two hours from my house. It's been a fun new experience for me and my family.💞
0 -
Candy, Joyner, LoveFrom Philly, et. al...
Yes, yes, I am right there with you wondering about progression when and how. And sometimes the depression comes after being on this regimen for 2 1/2 years already which causes mental fatigue. People tell me I look great but I know I don't feel great and I don't want to say anything. I also (selfishly?) feel like since I have done so well so long that people forget that I am still sick and expect more than I can give. That is because I am a giver and have always been the one in my family to do everything for everybody. My family is supportive now when I need them to be so I am whining here, but I think there is not a lot of information on how to deal with this long term. I am sure it will be different for everyone but I agree that I am a planner and just want to know what to expect. I try to do everything as normal as possible but then realize I just can't. Sorry if this is not helpful, but you are not alone. I am so thankful for this site where we can express our true feelings. I have grown to love each and every one of you, and have a list where I pray for you even though I don't talk about it much here. Sometimes the toughest time for me is when I look into my granddaughter's eyes and wonder what to say to her when my time comes... Sorry but it has been that kind of day for me too.
Hugs! Chris
0 -
And I do worry what the end will be like. That's the scariest thing of all for me. And I can't control it.
Chris, my friends and family are just the same: they now rather expect me to be normal and to do everything I've always done, which is everything for holidays, etc. They're not being unkind; they just see Mary Sunshine and forget that there is likely to be darkness ahead. They want to believe that all is well again, since I'm tolerating the drugs well, and will continue to be. Me, too, but I'm more of the realist about this.
What a downer of a holiday conversation! Wish we could do a group hug! (On my deck, although it is very cold and dark right now).
I pray for everyone, too!
xoxox
0 -
I've just started Cycle 18, and I don't know if it's denial or self-preservation, but I honestly never give a thought to "what next?". I've always been a "cross that bridge when we come to it" kind of girl, so it's not unusual for me. As far as I'm concerned, EVERYONE is terminal - everyone is gonna die of something, right? And except for being tired a lot, I'm doing pretty well.
I do have a self-pity day now and then, usually when the family expects just too much from me. I realize that's mostly my fault, because I'm also Miss Mary Sunshine who does everything around here, but sometimes I'm just exhausted and I want to scream "Remember?!?!?! I have CANCER!!" I've never done it, but sometimes am so tempted...
I expect to be super busy tomorrow (I'm cooking Thanksgiving dinner for 14 by myself, and will prep tomorrow), but wanted to let each and every one of you know how thankful I am for you. I never could have taken this journey without the lovely people in this forum, and I thank God for you all every day.
0 -
In all my years hanging out with cancer survivors at our Flying Colors Support Center I never met anyone who didn't experience fear. There's that big fear at diagnosis when you're sure you're going to die. (My mother died in two months so I felt that big time.) There's the fear of surgery, chemo and/or radiation and all its possible discomfort. After you get some survival time under your belt, there's a new pain or a new scan that gets the drumbeat of your imminent death going again. The biggest fear for most of the people I've known is not living to see their children or maybe their grandchildren grow up. The other is having to leave a grieving spouse behind.
When you have a disease like MBC where people, perhaps even your doctor, have told you that you'll never be well it's easy to let your thoughts slide toward death and how it will be. Most of you have read the stories of my many friends who are still living years and years (even decades!) after/with MBC. Their experiences let me know it's possible to live long and well no matter what statistics say.
However, I also have friends who have died from MBC (even before it was called MBC!). They were afraid of how it would end but I'm going to tell you it happened for each of them in a very organic way. Some were in hospice at home with family, kind nurses and technicians keeping them comfortable in their own beds or hospital beds. Some went to hospice residences and got beautiful care. Some went into the hospital with varying issues and died there. The nurses were able to tell when the end of their lives was near so everyone could gather around them. Nobody died unexpectedly.
Most of them chose not to have huge numbers of visitors. It was like their worlds got a little smaller but sweeter. I only had one friend who was screaming in pain near the end and that was because her husband wanted her conscious enough to say goodbye to a distant relative who was on the way. That was nuts and I called her hospice nurse to come and give her a shot. It worked and she died comfortably.
All this to say, I first thought I would die from breast cancer in 1994. When the MBC came on my chest wall in 2012, I had some moments when I thought that would be it. In 2016, when the bone mets showed up I was afraid of breaking bones and being in pain and wondering if my time was short. Along came Ibrance/XGeva and the encouraging stories you shared here. This last bit of progression this month brought its down moments but I know many of you have had stable disease once again after some progression so I'm hopeful that going back to my original dosing will work.
With the hurricanes in the South and the fires in California, not to mention the shootings all over, I remind myself that even perfectly healthy people can be gone in an instant. I pray that all of us can live today without fear of what's next. I pray that each of you has a reason to be thankful and that you won't let yourselves fret because you can't create perfect holidays like you once did. Mostly, I pray that you won't be afraid because perfect love casts out fear.
This world is just the short part of life; eternity with the perfect love of God is what matters.
I love you,
PatGMc
0 -
We love you, too, Pat. Bless you for your wonderful wisdom, insight, guidance, and often, humor in the face of this situation.
0 -
So much love to you all! I really, REALLY, appreciate each and every one of you.
I am so, so grateful to have found these boards and you folks.
When I was first diagnosed and before I found BC.org and this support network, I was like a little star in the vast universe searching for her galaxy. I was enveloped in a realm of unknown and nothingness for several months until I finally, somehow came across this website.
And now I have found my family of shining stars
YOU! I just got off the phone with my dad - the holidays are a time when deaths increase for different possible reasons. My dad and I listed off a couple people we know that just passed away and a couple people we know who are in the ER as I type this. It is true - we can go at any time for any reason.
PatG - thank you (again and again and I know I will need it again!) for the reassurance. It brings calm and peace into my heart and soul
0 -
In light of our discussion today this just popped up on Facebook:
0 -
Pat, sometimes I wish this site had a "Like" button. Thank you!
0 -
Joyner, when I was nearing the two year mark on Ibrance I became very depressed that I was closing in on the median PFS statistic. I know we’re not statistics, but I want to stay on this med as long as possible.
I don’t have any coping skills around this. I think. Cureious posted that. The median PFS for bone Mets patients on Ibrance was theee years, so I’ve decided to delay my worry into the future
0 -
I’ve wondered too about how we actually die from this. Andrea Parker’s husband posted a lot on FB when she was transitioning and I learned a lot from her experience and from ofjers’. I understand now that our organs will start shutting down and we’ll either slip into coma or they’ll medicate us into one so that there is no discomfort. I find this all so scary but trust that when I’m at that point I will be able to let go.
0 -
I may have told you guys this before but last winter when I had that terrible flu followed by pneumonia, I had a moment when I thought I might die. I don't know if it was day or night as I had lost track but I remember asking God to be with my husband and my daughter when they came in and realized I was gone. I had this complete confidence that God was right there with me and felt overwhelming peace. That moment made it so worth all the misery of the sickness as my confidence is complete that I will never face death alone. Neither will you.
Love from PatGMc
0 -
Thank you all from the bottom of my heart for sharing your fears and hopes and wisdom and insights today. As I sit and read this, I too, of course, ponder my own mortality but I have this strange sense that it's yet a long way off. Maybe as Ciaci said, I'm living somewhere between denial and self-preservation, but right now it works for me. I've got this awesome adopted 11 year old that God asked me to raise and I am determined to do it. Perhaps it's also because it is still early days for me, I don't know. I only know that when I read your words, I completely relate but I don't yet feel overly anxious.
I did spend the final 4 weeks of life with my mom as she passed from Luekemia 6 years ago on New Years Eve. It was quite peaceful for her when she decided it was time to rest. We talked for hours and laughed and cried and most importantly, I had the chance to tell her all the things that I wanted to share with her about how seemingly perfect my childhood was and what a profound influence she had on my life. She even picked out her outfit, nail polish and lipstick for her open casket. That was such a gift, as 15 years ago on thanksgiving night, my father died very suddenly and without warning. In an abulance, alone, and without any of us there. I am still devastated.
So do know that when our time finally comes, our loved ones will have a sense of peace in knowing they were there to care for us and share their deepest thoughts and gratitude and that will comfort them for years and years beyond.
I pray that each of us remains stable and loving life for as long as humanly possible but I hear your fears and I am holding your hand in mine.
I love you all and I am so very Thankful for all of you! 💕
Love to all,
Lauren
0 -
Lauren, I'm so sorry you didn't get to be with your father but I know he wasn't alone. I'm glad you and your mother had moments to laugh and cry. My mother gave me a great gift in her last days. She knew that laughter was what I needed most after some especially sad times as she divided her jewelry between me and my sisters, saying her goodbyes. The next time we were alone she asked me to lie flat on the bed beside her and close my eyes. She said, "Now, open them and look up....Is that not the nastiest (blank) light fixture you've ever seen and I've been looking at it for weeks!" It was our last laugh together and I will always treasure it.
Love from PatGMc
0 -
When I got the results of my scan earlier this month which appeared to show progression, I was very down and anxious. I think it was the first time in all of my cancer experiences where I truly felt dying was close. I hope that the scan confirms that I am not progressing but it is only here with all of you that I truly feel comfortable talking about how I feel and my fears. God bless you all and I truly love you all for all of your sharing and insight. Pat, you are so amazing and your posts tonight offer me so much comfort. I have also wondered what it will be like for me. How I will overcome my anxiousness and truly offer peace to my children and say goodbye to my grandchildren. I pray I will be brave and at peace when the time comes. Your comments somehow make me believe that it will just happen with Gods help.
Have a wonderful Thanksgiving and Ciaci cyberfingers to give you help and support making a dinner for 14 by yourself. Wow. Many of you amaze me with your activity.
Cathy
0 -
You are absolutely right, Pat.... he was not alone. I just wish I could have told him all the things in my heart! But thank you for reminding me that he was not at all alone. That will bring me great comfort tonight.
And yes, that final moment with your mom is indeed memorable! My mom kept sending me back to the closet to pick something with more 'bling' - she wanted to shine!
Cathy - big hugs for you... that scan is going to be the best yet!
I will be discovering the Wizarding World of Harry Potter in Orlando with my little man this long holiday weekend here in the US - I hope I can keep up with him!
I hope you all find some time to relax!
Love to all,
Lauren
0 -
I would be interested in the phone number and information of this new funding opportunity. My Pfizer or PAN money ran out this month. I’ve restarted the process but a plan B would be nice to have. Thanks for informing us about this possible new funding source.
Suzy.
0 -
Hi all!! Just wanted to pop in and wish you all a fantastic Thanksgiving Holiday!! I am graciously thankful for all of you wonderful ladies!! My MO took me off of the Letrozole 13 days ago because it was making me feel awful! Since then I have felt like myself again even with being on the Ibrance and I have cherished every moment of it. I have had energy again and I love it!! OnThanksgiving morning I will start on Aromasin and I am super anxious about it as I don't want to start feeling crappy again. Here's to crossing my fingers and praying that it goes as well as can be expected. Much love and hugs to you all
0 -
And Pat, I love your precious mother. Mine was adorable, too, and a complete "southern lady". But, she always confided to me and to her special friends that her favorite word and the most effective in the English language was "SHIT"! So unlike her in ways but so perfect in others. I think that it was her only swear word, but she used it so effectively and precisely that she reduced all around to "on the knees" laughter.
You all have me in happy and sad tears reading all of your insights and stories. Lauren, you especially make me happy with your stories of your mom's selected nail polish and lipstick and of the trips to her closet to choose things with more bling for the open casket. What a wonderful character!
Pat, the light fixture story is irreplaceable. Thanks for that and for all of your comforting and effective words.
This morning I thought about how my wonderful family (two boys and husband + brothers and their dear families) generally treat me as though I'm not sick. It occurred to me this morning that my husband and sons were so devastated by the diagnosis (my youngest son was inconsolable, but kept those reactions to times when he wasn't around me for the most part...I heard that from our elder son) that they have grabbed at the opportunity to believe the best and not focus on the future. I get it.
I love you all, and I apologize for being maudlin as we approach what is my own favorite holiday....no gifts, just great food and visiting with family and friends! Off to make chocolate silk, butterscotch, and apple pies....on each! And spinach casserole!
xoxo
0
