Ibrance (Palbociclib)
Comments
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Pat,
Thanks for all of your uplifting comments, always. You not only bring a ray of sunshine to our lives, but you also express a lot of common sense. Like everyone, I get down sometimes about my current diagnosis. But as others have said, if we dwell too much on it, we are missing out on what life has to offer. I prefer to dwell on how to live my life, and, like you, I try to use each day to figure out my place on this earth.
Bev
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Simone - That is fantastic news! Congrats! That's so encouraging. My wife had her first scan yesterday after 3 cycles of Ibrance. We get the result tomorrow morning. Hoping for shrinkage!
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Simone great news. I don't think I have ever used the Stage IV statement. I had a friend who had bc and told her my story. Advised her to follow-up yearly with her dr. She has not contacted me since. I think people are too scared to follow-up, etc. After surgery, chemo and radiation was told make it to ten years and you are home free. I made it 16 yrs and thank God MBC was found early and not later. In spite of SE with I/L will take it over chemo/radiation. I am sorry for those that have to do this treatment even though it is helping. I might have to do it again some day. Live life like there is no tomorrow.0
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I posted what I did to validate what Ciaci was feeling. That's all.
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Ciaci, Jaycee and others,
I am glad you posted about your experiences with friends who have "lower" stage breast cancers. I recently reached out to someone who had a recurrence and hoped I was being supportive and empathic. I did mention my Stage 4 cancer because I hadn't told her about it before. It must have freaked her out because we were going to have lunch and she decided to bring along another person. It seemed clear she didn't want to discuss breast cancer with me. I felt really bad-like I had done something wrong by mentioning my own cancer. But I do identify myself as Stage 4 because otherwise I have to keep explaining why I am not working.
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Thank you, Chicago. I appreciate the support.
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Hi everyone. Thanks for the congrats. It took me 8 cycles to get to ned. For those of you just starting, hang in there if your first scan doesn't show ned. It will take some time with I\L. Also, no progression is also great. Many on this thread have been on I\L for years.
Nicole,
I've been on the coc protocol for over a month. I am not sure if that had anything to do with me getting to NED as the coc mo told me it normally takes a couple of months to see any benefits.
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Simone. Great news on being NED. That’s awesome!
Philly, I completely understand how you question your treatment being relatively easy, I do too. I have even wondered if I should wish/ask for heavier treatment. But then I remember how my life is still pretty normal and I feel grateful for that. If only feeling good was directly related to good scans! I’m up for my second set tomorrow and my mind is everywhere, I can’t seem to rein in the worry.
Ciaci and Nicole, I’ve been on both sides of the stage 4 “fear”. I had about 2 weeks after first dx that I thought I was stage 2 or 3, heading to chemo, etc, then scans showed liver mets so denovo stage 4 for me. It’s definitely a place no one wants to be. I did stay away from the stage 4 boards before my mets were found too. Almost like I thought it was bad luck. I think newly dx people need to process things and it may be too much to take that in along with knowing about stage 4 possibilities too. We all do what we have to do to accept our dx.
Jaycee, I always appreciate your posts. You tell your “story” and I feel like I know you (some). Too bad we can’t all sit down together IRL.
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Simone, include me in the happy dance for your great news!
Jaycee and Chicagoan, yes, it is all part of our story. Some people want to talk with me because they are afraid it will happen to them and they want to know how to cope or are just curious. Others stay away because the conversation frightens them too much. A few really do care and are willing to listen. Many send me notes they are praying for me. I accept all responses like you do without criticism since we are all different. I am sorry I didn't understand better when my mom went through her ovarian cancer. She never had chemo and suffered in silence so I was unaware she needed me differently when I did help (I lived far away). I was naive--not uncaring.
I admire my friends and family who have gone through all the "tougher" stuff and are here still with support, smiles and hugs.
BLMike, praying for good results although sometimes it takes until at least the next scan. Your wife is fortunate to have you.
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Congratulations Simone!
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When I hear about Cokie Roberts just dying from breast cancer at 75 it makes me furious and sad at the same time. I consider myself a great researcher, but she was the best. If she couldn't figure out a cure for herself, and was brilliant, where does that leave us? I understand, of course, that we have no idea what type of breast cancer she had, at what stage it was discovered, blah blah blah
https://www.cnn.com/2019/09/17/media/cokie-roberts/index.html
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It bothers me that they have to say "from complications of breast cancer." (I started a discussion of this in the steam room.) That is what her family released so they have to go with it. But why not just say she died of breast cancer? Only the NYTimes said that. Is it not politically correct to die of breast cancer? Is being metastatic a complication of BC? She was a great reporter and she would have said that she died of breast cancer" RIP Cokie Roberts.
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Simone- WooHoo on the NED PET !!!!!!!!!!
I identify myself as Stage 4 because I too think it explains why I am no longer working and why I am still getting treatments, scans, and doc appts. Yes I look "normal" but I am not early stage. It is what it is. I am late stage. I will always be on some kind of treatment. I have continued fatigue. And things can worsen at any time. As someone said, ( I forget who ), early stage has an end date for treatments. When I was first diagnosed they thought I was Stage 2. I was told I would have 5 months of chemo total. There was an end date to strive for. Ringing the bell and all that. Not true now. No " I beat cancer". Call it what it is.
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Dear Jaycee and Friends,
Please forgive me if I seemed to be critical of anything you said here. I didn't mean to hop on my high horse about staging! Everyone gets to feel this and speak about it any way they wish. I'm obviously guilty lately of doing too much talking and not enough listening.
Trust me, I know there are many who think I've lost my mind entirely and that's okay. We all start this cancer journey with different life experiences that shape our reactions. My childhood up to age 15 was spent in the house with a monster of a father but I shared a room with a sister who could make fun and laugh at anything. We had a mother who, in spite of the challenges my father brought, sang show tunes and danced when times were hard. All that to say, when troubles come my way laughter is often my go-to coping mechanism. That sister has also had breast cancer twice and we made fun of it just as we did the crazy father. It's who we are and we know we are fortunate to have each other.
So, again, I honor everyone's right to do this dance to your own tune and I apologize in advance for future "do this my way" lectures. If I start to tell you a story about a little bird flying off with my Stage 4 nametag, please just say, "Oh, that crazy Pat!"
Love from PatGMcSorry
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Pat, we all love you here. You bring us sunshine through the midst of the stormy clouds. Don't ever apologize for the person you have grown to be. You are special here. No one knows our history or our present struggles. We all may accidentally sound a bit critical at times but don't mean to. I always appreciate the accepting love of my fellow MBCers who are very special to me. Chris
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congratulations Simone!
I identify as stage 4 or MbC. Some have called back and some have not. I’ve done damage being too detailed etc. I guess I’m a bIt rough around the edges. A dear friend coworker of mine whom I started a 501c3 with in 2016 was recently diagnosed. She has invasive negative bc is her 2 -. She had a partial mastectomy and was told they need to do surgery again she’s currently doing 4 cycles of taxol and then a surgery and then radiation. She called me after taxol bc she thought she could go to work bu quickly found out that she’s too sick. I text and call her more often than she calls me. So far they’re saying she’s stage II. She’s having a nightmare of a time and was going to stop treatment. I call her and encourage in my rough way bc that’s who I am. When I try to talk nice about cancer it doesn’t work.
Tanya
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kit kit,
I feel the exact same way about Cookie Roberts, what a huge loss.
Also, Stage IV is the only breast cancer that kills. I completely agree that is is misleading and confusing to say she died of complications from breast cancer. I hope they can tell the entire story.
On another note-Is anyone planning on going to the Stage IV stampede in DC in October? I’m going. I’m so nervous for some reason.
Congrats to everyone with good scans and I’m so sorry Muddling that Ibrance has failed you. Please let us know what you go on after chemo. I agree with Pat and think revisiting a cdk4/6 after a break could be an option down the line.
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Oh Ladies, lots of chat around friends and early stage treatment, plus how we deal with those who think we should talk with others- which I’m all for if it’s right. However all cancers are not the same and we can never really empathise with another as we have no real idea how they feel. Most of us have no real idea how WE feel... right?
Pat, Jaycee, curious, into the light and everyone else we very much appreciate your posts!
Personally, I feel no guilt as been through all the early stage stuff already ( mega surgery, chemo etc for a year). Lost several friends and gained many more. Stage 4 is frankly crap and I’d really struggle without you all now, even though I’m doing fine on I/Land NED for now. You make me laugh, think and occasionally cry. Keep it up!
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I thought the same thing you all did when I heard about Cokie Roberts.
Also, sad to hear about Alex Trebek's news.
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About the Stampede (and may I add that I speak only for myself here):
Having spent 20+ years encouraging people to see that cancer is not a death sentence and knowing from experience that MBC can be a chronic illness for many, I struggle with an organization that would make the central point of a gathering of MBC survivors a "DIE-IN". I just do.
Love from PatGMc
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Pat, you realize I would be public enemy number one if I did anything to diminish your relationship with everyone here. I try to avoid that.
Now my good news. Just came from MO. My cancer has gotten lazier. I actually have a copy the Pet scan report now. I just had a phone report before. Where my lung nodule usually grows 2 mm in four months, this last four months, it only grew 1 mm. Also, my MO agreed to give me a month off appointments in October and not see her until Nov. We are going to see my son and his wife mid-October for ten days and the trip falls right when I would see her. BUT, she is leaving the practice. She and her husband, an internist, are opening their own practice in a brand new building. They will have their own ... wait for it ... Pet scan machine. The construction company claims they will have the building finished mid Dec. She believes them, silly woman. So some time next year, I will have to decide whether to go with her or stay with the practice I have been with since early 2014. I will have to have a long discussion with her about my future treatments first. I told her I would follow her anywhere if she could manage to steal my onc nurse and get her to join their practice. She laughed but she might just do it.
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Jaycee, I have parked my high horse for the night so I can just spend the evening celebrating your Lazy Cancer. Wahoo for you!
Love from PatGMc
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Yay for lazy cancer!
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Re Cokie Roberts:. I have to wonder if the conplications she died from wasn't her reaction to treatments. It still happens. I know 3 women that died in the last 6 months of side effects. 2 had breast cancer and radiation plus chemo. My friend had the y90 procedure twice a month apart to 2 different liver tumors plus radiation to her spine for pain plus chemo- I don't know which. Maybe too much too close together. Will never know. I hope someone tracks all these deaths due to treatment so they can figure out how they go wrong so often. Still sad here.
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Jaycee, happy to hear about your lazy cancer - may it get lazier an lazier until it falls asleep forever. The new practice with its own PET/CT sounds appealing - let's hope that they can snatch the good nurse and you never need to have a PET in a parking lot again.
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Congrats on good scans Jaycee.
Pat, I see your point too. I love thinking of it as not a being a death sentence. You reached out to me last year and explained that to meand it gave me hope, so thank you!! I try to live in that space and it has helped me.
Then on the other hand, my one friend who lives two hours from me is scrambling to get into a clinical trial and is close to the end. My other friend had the same cancer on paper as me but I/L didn’t work and she quickly progressed through several treatments/chemos.
I think this event is a way to get adequate funding and to make a splash to be seen.
Gailmary: RE: Cokie Roberts: it could be from treatment. I’m sorry about your friend.
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Novagirl, it's so hard to see someone you care about take a turn for the worse with this disease. We're sad for them and much as we try, we often see ourselves in their shoes. It's so hard not to project.
When we had the support center and I met hundreds of people monthly with all kinds of cancer, I spent a lot of time grieving when someone died. I had to keep reminding myself that far more people lived after diagnosis than died.
I'm thankful for the ones who died because they taught me that the end of life is not a terrible thing for the patient or the family. I learned that pain can be controlled and that there is almost always great peace at the end. Mostly I learned from them that there is a way to live contentedly with a bad diagnosis all the way up to that end.
I'm thankful for the ones who lived because they continuously blew holes in all the statistics! You can't beat having lunch with someone whose doctor gave her a year or two to live back in 1996! Hard to stop smiling!
Love from PatGMc
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Congrats to so many tonight! Good to hear about your lazy nodules, Jaycee, and I hope they take a permanent siesta!
Oh happy day ! Good news for me today.! No signs of the left lung nodules now and decreased size and uptake on the right sided ones !
Let the band play on as we wait for more of us to dance off into the land of NED !
Goodnight all, love yas!
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Ginny, continuing the happy dance with you. Good news is the best kind!
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kitkit, I agree, how can someone as accomplished and smart as Cokie Roberts die of breast cancer?!!! (whether for the cancer or complications from the treatment, its all unacceptable). She was first diagnosed just one year ahead of me, so, yeah that makes it real!! As with every death, and every bad turn of events, the reality of MBC rears its ugly head . We absolutely have to do better, and sooner. I hope Cokie found help and support, maybe she was even one of us here.
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