Ibrance (Palbociclib)
Comments
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Micmel, I do think what you're going through is PTSD and probably all the stages of grief. I believe I can promise this...that time will make things better. In 1994, newly diagnosed, I grieved leaving my husband and daughter. I chose the songs for my funeral and pictured my family crying over my casket. My mother had died two months after her cancer diagnosis and I felt that would happen to me. But here I am and it's been 23+ years! Meeting other survivors through support groups helped me. I hope you can do that. I lost some of those friends over the years but had the joy of promising to do their eulogies and make sure their funerals went the way they planned. The good news is that most of my friends of two decades are still living and doing well. Some of them had MBC before Ibrance and they've thrived. I pray every day for all of you here, not just that Ibrance keeps you stable but that the great cure is found. I want you all to be here for your children, your grandchildren, your husbands, your sisters, your mothers and fathers. I want to keep loving my husband of 48 years and to grow old(er) with him.
I've told this hopeful story before but I'll tell it again. I had friends with a kind of leukemia for which there seemed to be no hope. They got a new trial drug (eventually called Gleevec) and responded well for many years. One stopped responding but got on a new, improved drug and is doing well. Recently, a new study has shown that half the people on Gleevec have been able to stop the drug. They are cured! Why would we not believe this can also happen for metastatic breast cancer? Researchers are smarter than ever. Their knowledge of cells has vastly increased in recent years. You and I are taking the biggest game-changing drug in recent oncology history. We can confidently believe we will live to die from something else!
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OH Pat I am having a bad night and as I read your post tears I streaming down my cheeks. Thank yo
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intolight. My DH is trending the beds this summmer. I just enjo
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Hopefulgirl, here we are together tonight. We are alive and this magic medicine is working inside us. Sleep well, my friend.
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Several things....
Interesting article about Kisqali in "Health News":
"Novartis breast cancer drug Kisqali wins European panel backing"
My heart hurts for everyone struggling with this wretched disease, especially you younger BC sisters. Hang in there, girls (and boys), and do what it takes to overcome and to hold on for the next great medical development. They're coming.
Z, thanks for your thoughtful input, as always. You reminded me of something else I was told: My surgeon (who presented my case at the Tumor Conference) said that it has been his experience that when a cancer is slower growing, it also tends to be slower to respond to treatment and thus slower to become measurable as "improved".
And last....I have a friend whose husband is an onc. She has told me how he repeatedly tells her of patients whose positive attitudes seem to make an enormous difference in their health and their response to treatment. I trying to be POSITIVE....hard sometimes!!
Hugs and positive thoughts for and to all...
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Micmel - I always feel like I have a little black cloud (the reality of cancer/statistics, etc.) hanging over my head.....sometimes it moves back a bit & sometimes it is pouring rain on me directly above emotion wise. You said that you've talked to someone. Have you tried EMDR with a therapist? It is a technique used for ptsd, which my therapist said I definitely have, and it was very helpful to me. Don't get me wrong the black cloud is still there, but it has gone from a huge cloud to a smaller one. The technique sounds crazy (my family called it my voodoo), but it has helped me and some others on the board with cancer and a military friend of mine as well. Just thought I'd mention it if it could help you or others out there.
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Micmel, You've been on my mind so much since last night and I'm not sure what to say because I don't think much of what we hear makes any difference when we are in these dark holes. I believe also you have PTSD and probably are also suffering from grief as if you'd just lost your DH. I know I felt that way in the beginning for months. I'm at a much different stage of life having raised my children and seen grandchildren now graduating from high school and college. But, the thing that brings me to my knees is knowing what my dying would do to my DH. I'm not so much afraid of death as I am of the thought of his agony watching me go through this.
When I was first diagnosed with BC in 1991, I read a lot of books about cancer, not much internet back then. The one sentence that has stayed with me all these years is " there is no cancer that someone hasn't survived ". That someone can be you and a lot of us here. We are just on the forefront of big breakthroughs with new drugs all the time. Hang onto hope and try anything you can to find help for these dark places in your mind. Remember there are so many people praying for you and the power of prayer works miracles. I may have mentioned this before but there is a thread on this forum called "Thin slices of Joy" which you may have already seen but read the beginning reason why Serenity started it, and I think you will see that looking for little slices of joy in everyday helps the dark times.
Warm hugs and many prayers,
Faith (in the future).
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Faith~it has been a hard weekend for me and my DH. Sometimes it just hits us hard. I try to stay positive and I truly do think this is extraordinary Medicine that I feel Blessed to be taking, I always end that thought with, where will I go if it stops working? I talk to many people who know people with bone mets live for decades. I hear it with my ears, but I'm always worried about every little pain and ache or feeling. It's just something that no one should have to feel. Truly awful way to have to live. Each day waiting for the other shoe to drop. yes it's all about my DH and My kids. I have three. One is 22DD DS is 20 and DSS is 16. All of mine have have graduated but my stepson is going to be a junior. I got to see him receive Eagle Scout. Which Is a big deal. I feel brought to my knees when I see the pain in my DH eyes when those moments come. They arrive a lot. I would give my life for him, but I from the bottom of My soul never wants To leave him for one day, no less possibly years. Thank you for thinking of me and the prayers. I think of you all daily and pray for us all to have happiness and yes I'll say it a cure. All I want is for us all to have our safe feeling back. Our safety, firm footing back,to where it doesn't feel like something pulled the rug out from under us or pushed us into a door We cannot return from. I wish I just could change things. for us all. Bring back our security. And sense of living again. You're all sweet kind ladies and I thank you for helping me and letting me apart of thingshere, where you all understand. And even though we've never met. Strangers never crossed myMind. 💔❤️ ~M~ Thank you Faith & nbnotes and of course Pat!! Also Bighome. Thank you for the thoughtful posts. It means so much. Dianarose~ I hope you're enjoying your trip. You're also a very special lady. A strong lady. For sure
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Sorry to be so predictable ... but here is the inevitable paper on how much a positive attitude effects outcomes.
"In this review, we present a testable theoretical model of pathways by which stress may result in cellular transformation and tumorigenesis. This model supports our overarching hypothesis that psychological stress, acting through increased levels of catecholamines and/or cortisol, can increase DNA damage and/or reduce repair mechanisms, resulting in increased risk of DNA mutations leading to carcinogenesis."
http://onlinelibrary.wiley.com/doi/10.1111/jabr.12019/full
I am mostly positive and optimistic. I do sometimes wonder if I am kidding myself that I will find my way through this maze ... But if I knew for certain I was going to die this coming December, how would I want to spend this time between now and then. I know I would not want to look back and find I spent the whole time worrying. So if I am kidding myself, what the heck. Certainly the data shows that stress is going to make things worse.
Once you've got your diagnostics right and your treatment plan lined up, denial is a fine thing.
>Z<
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Hello ladies,
I was checking out your ibrance board because my oncologist is suggesting it along with Foslodex after what looks like mets in my thyroid.
Then I was readying what Micmel was saying and can totally relate. It's terrifying when I let my mind go there and really it's just trying to make sense of something that is statistically not likely to happen to anyone. The anxiety is actually my mind attempting to find control over something that I have no control over. My panic attacks have gotten so bad that xyanex is now added to the current med of aromasin. Just in the last few days, when I feel a panic attack coming on, I stop myself and think, "gurl, you were fine 10 mins ago and nothing has changed, literally nothing"...I take a couple of deep breaths and move forward.
I don't want to completely disregard my feelings on the matter but enough already. My negative feelings are what will ruin my life...cancers been there, I just didn't know about it. Honestly, it's part of the fight, fighting to be normal, carefree, what I call bc, "before cancer". Guess what? Absolutely nothing can ever get me back to bc, it's like your first kiss, can't get that back. What I can do is acknowledge why my mind is playing tricks on me, know that if that horrible time comes I will handle it the best I can, and then move on with my day...every moment I feel crappy I do this, a million times if I have to.
Sending love to all😘
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I may be playing with semantics here, but I have a problem equating stress and attitude. I don't mind being advised about stress by family, friends or health care professionals. There are methods for reducing stress; counseling, medications, meditation, etc. I also don't mind being advised about my attitude by family and friends but I don't want health care professionals telling me to adjust my attitude. My attitude comes from inside, my heart, my mind and my soul. I don't need to be guilted about my attitude. It sounded to me like Micmel was feeling guilty about her attitude and that bothers me. If a doctor were to tell me that I need to have a more positive attitude, I'd think, "how do you think that makes me feel?" I wouldn't say it but I'd think it. Telling patients they need to change their attitude is classic blaming the victim behavior.
I guess I need to adjust my attitude.
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Jaycee, I am with you here. It is the same reason I never tell a fellow bc to be strong. That puts it all on the person hurting as if not being strong is the problem and causes even more stress. Instead, send hugs and prayers and just let the person know you are there for support if they need you. Be a leg of support for them. That's what I need anyway...
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I Don't know how to balance much these days. Any little amount of stress and things going wrong, I dont seem to have any strength to be able to tackle anything that is stressful. My blood pressure rises and it does completely feel like a panic attack. I feel guilty because I got sick and my family doesn't deserve that, not that any family does, but I have always been the relationship guru, always making sure everyone had what they needed everyday seemlessly. Now I can't do it. I had so many plans with my sweet husband. I don't want him to feel that kind of pain and loneliness because I had to go and get sick on him. I have anger, emotional trauma,physical deformities, guilt, anxious feelings that never leave and my heart seems to always be racing. It might be triggered I am noticing because I have to go into the infusion center Wednesday for my blood work and my monthly reminder shot that I am never far from the cancer center visits. Even if it is only once a month, which don't get me wrong is much improved. It is like a black cloud over my head, when everybody else's day (and I don't mean us by any means) have chriping birds and rainbows along with planning for the next vacation , not their next visit to the infusion center. It's Infuriating and not fair to any of us ladies here. I dont know which is worse actually, Being the sick one or watching my sweet husbands face, in that moment when it hits him enough to bring him to his knees in front of me and all we can do is cry together, powerless and confused and scared. Those are all emotions that cannot be controlled with anything as far as I can see,and have experienced over this past year and a half. Just one big black hole I've been sucked into. I know that stress is awful, proof is Friday morning when I woke up I had a huge cold sore on my lip. I only get them when my stress level is out of control. Just another reminder that I am only 47 and realize I am completely stressed 24 hours a day and even in my dreams there is no peace from that empty loss of a feeling that I cannot ever shake. Even when I hear him say how well I am doing. Yeah I get that. But at the end of the day, he goes home and I go home with cancer still. Hugs to everyone. ~M~
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Boy, I wish that I could help, Micmel and Myra. But, all I can do is send a big hug, which I'm doing.
I find that for me personally (at age 71), I've always been someone who has been able either to 1) address, tackle head on, and "fix" a problem, or 2) move on and put the issue behind me, once I realize that I've given it my best effort and I can't fix it. It's counter to the core of my being that I can neither fix this nor to leave it behind me. It's just there. All the time.
Hugs to all....
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Myra~ Joy~Jaycee~Into~And Z~Faith~ and anyone else who read my emotional outpouring, thank you for listening to me. I just had a really bad weekend. I'm sorry to be so lengthy. Sometimes there is a lot to get out. I appreciate everyone's thoughts and input and kind words and thoughts. I adore the support you all give and I intend to be supporting you all if or when you have a bad day/weekend/month/centuries! Hugs to you ladies! Thank you again. I think I can, I think I can! I haven't seen LuLubee lately. Has anyone heard from her or seen her around? 😞 Just concerned. Ty again ~M~
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Micmel, just sent you a private message.
I just read this article on the big pharma companies and the race to a cancer "cure"...interesting and encouraging! We may be riding the wave of what's coming next!
Behind big pharma's race to develop the next wave of cancer therapy
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Joyner, I'm so glad you posted that article. I'm more and more convinced that things are happening really fast as these companies race to find cures for all cancers.
Z, I too think denial is highly under-rated!
I did long ago grow weary of people telling others to get a "positive attitude" as though one could just make that decision and happily move on. In much the same way "eating healthy" becomes a more reachable goal when we add fruits and vegetables that take up space junk food once held, I like adding Faith's slices of joy that can overtake brain-space now occupied by sad thoughts. I'm thankful, during a season of clinical depression 40 years ago, to have learned Rational Emotive Behavior Therapy (REBT). It's a method of examining the thoughts that drag you into the doldrums and deciding whether they are rational or not. They can be caused by past trauma or current circumstances but, once examined, can usually be overcome. I recommend the work of Albert Ellis and I'm sure there are many Internet resources on behavior therapy.
Having suffered from depression and a number of cancer occurrences, I can say that depression was certainly the worst of the lot. Anything you have to do to overcome it is well worth the time and expense. Usually it only takes a few sessions with a good psychologist to get on the right track.
In the meantime, I'll spend some time floating down Denial! I bump into Reality now and then but whack it with my oar and keep going.
Micmel, none of this is said to make you hush up your feelings. You are freshly into this and grieving is so necessary. I know things will get better for you and your husband. Let those tears flow until you're done; it's proven there are toxins in them that the body needs to release. I pray for your peace and your healing.
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MIcmel, I am sending hugs, positive thoughts and prayers. - sorry no words of experience or words of wisdom. Currently I still wait to receive my first prescription of inbrance and letrozole - so much paperwork to get there.
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Myra104, welcome to the Ibrance Dance! It's wonderful to know that this drug can reach all parts of you and change your story! We look forward to holding your hand as you get started and High-Fiving you as you heal.
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Hopeful~that is a beautiful picture!! I love it. Thank you everyone. You too Pat for the kind words. I am going to have a better week this week. I promise!!! ~M~
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Hopefulgirl: thank you for picture. It took me away for a time. I want to be that girl. Just sitting. Just looking. No housecleaning left undone, no dinner to get on the table, no office meetings to attend. No worries, no past, no future. Just the present, just the now. Just the beauty of the butterfly. Just the beauty of the moment. Thank you!
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Midwest Laura
Your words are as beautiful as the picture!!
Cathy
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Thank you Pat!
That sounds like A nice vacation Midwest! Well and a cabana boy for me while my husband goes fishing😜
Micmel I hope you have started to feel better! I remember when I was first diagnosed I walked around stores crying every time I ran into a friend or received a call. It became quite comical so I'd laugh and cru walking through pets mart with 3 littles, crazy time.
My first treatments basically kicked the crap out of me, it was really tough time and my youngest had just turned two. I feel l grieved so much and accepted this was on the table back then. Keep talking about it, so good for us to vent when we need to!
X
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Hopefulgirl that really is a beautiful picture, thanks so much for posting it and Midwest Laura, I agree your words are beautiful. Myra 104, as PatgMc said, welcome to the Ibrance dance where we will help if we can and just be here to listen when we can't do anything else.Micmel, I'm thinking you just want to put the past week away and start a new week with a better attitude but I just want to say, don't ever feel guilty about getting this cancer or about any of the feelings you are going through. Many if not all of us have felt pretty much what you've expressed and we understand, we really do! You and your DH may or may not have a better week this week but there will come a time when those bad days and weeks will be less frequent in my experience of dealing with cancer at age 50 and now again so many years later. I believe it may be good to get those feelings out and know there is no judgment here and we will always be here to listen. Praying this week and the weeks, months and years to come are much better.
Sending hugs and prayers for everyone,
Faith (in the future).
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hi, just jumping into the conversation here, I don't know if this has come up in the last few weeks? Or months? Haven't been on here too often, But I found this interesting. It appears that ibrance now is now listing a new side effect on their patient information packets. "Abnormalities in liver blood tests" This side effect appears on the information packet online but not the paper copy that came with this months bottle. Which tells me they recently revised their labeling.
I Have been chasing down some goofy liver numbers and the doctor was certain it wasn't the ibrance until last visit this new information just appeared out of nowhere... just thought I would share.
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We are all so blessed to have this smart, focused "posse" of people out there paying attention. Casun, it's terrific that you noticed that discrepancy in the revised patient information packet for Ibrance. I would not have seen that. Among us, we find different articles, hear different speakers, and are exposed to different points of view and experiences from our heathcare providers and share them. We are surely stronger together.
I have been bouyed this week by the articles about the economically-driven race to find a cure for cancer in general. Money is a great motivator for research and discovery. We're getting there!
Pat, I LOVE this image...
In the meantime, I'll spend some time floating down Denial! I bump into Reality now and then but whack it with my oar and keep going.
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Hello Ladies; I am looking for help from our Canadian sisters on Ibrance this morning.
MY company is willing to cover 80% of Ibrance up to the max annually.
The insurance Co. which is Green Shield is advising that there is a $10,000.00 cap annually with all insurance companies.
Stated another the way our insurance Company Green Shield is stating: no carriers, including Greenshield on all plans, would cover over the cap and It has to do with the province not covering it.
Do any of you have full coverage on your health care plan that live in Canada
I am getting so frustrated and I want to start treatment and I can't get even the first month started.
Cathy
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Hi Ladies,
Don't know what happened to my first post (appears to have disappeared).
I'm looking for some advice/support regarding the fatigue on Ibrance. I am just beginning round 3 and the fatigue is relentless. I was wiped out during my off week between round 2 and 3 but the tiredness never seemed to improve like it did for the first cycle. My MO reduced my dose to 100 mg after round 1 which has resolved my blood count issues but I'm not keen to go down to 75 mg. And yet, I'm so tired all the time that I feel like I could sleep all day. My job is quite demanding, although we are thankfully going through a slow period at the moment, so I worry about my ability to cope if the fatigue remains or, god forbid, gets worse.
Does the fatigue lessen over time? Have any of you developed any tricks to help alleviate the fatigue? I thought I saw someone was on ritilin.
I feel like I am whining as I know that all of the treatments we are subjected to have some pretty wicked side effects and, other than the fatigue, Ibrance has been pretty kind to me. But it doesn't seem like a great benefit if I have a longer progression free period but I sleep through it!
ZZZZZZZZ
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Sadie~ I just woke up from a nap, after waking up at 7:00 am to feed my dogs. So yeah I totally understand the fatigue issue. I suffer everyday with it and I justCan't shake it. I spoke to my pallative care doctor and she issued me a doseage of Ritilan, I don't use it everyday, and save it for the days I have to go out. But it does help me get over the hump of the day when I take it. I usually take it around 10:00 am or earlier and I am good all day long. Usually by the end of the day I am so ready for bed, I can hear my pillow calling to me. I also noticed for myself, every month I am on this medicine, each month is different. There is no rhyme or reason To it. I don't ask my onc for any medicines, because they typically aren't One to have all the tools and deep knowledge of handling complex pain issues, like we experience, at one point or another. It helped me so much I take ten mg or even twenty if I have a big day ahead. Nothing else seemed to do the trick other than sleeping for like 12 hours a day. Who wants to do that? I hope you find the trick for you! ~M~
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Sadie-I find the fatigue unpredictable but in general, I am less fatigued now than in my first 3 months on Ibrance. I used to need to nap frequently but now rarely do unless I don't get 9-10 hours of sleep.
On an earlier post you mentioned the effects of your pleurex drainage. I'm wondering if your visiting nurse isn't over doing the drainage. Check with your pulmonologist. Mine said to stop as soon as the drainage became "frothy" because then air is being pulled out. Overdraining can hurt the organs by pulling on them. He also urged me to drain very slowly if I had any coughing, etc. One of my visiting nurses unintentionally was overdoing it. Eventually I was allowed to just do it myself which was much better. Hope your drainage stops so you don't have to deal with this-it is one more thing to add to the fatigue.
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