Ibrance (Palbociclib)
Comments
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I was curious to know how insurance or Medicare is to picking up the costs of all these differing treatments that are mentioned for when it is time to move on from Ibrance.
Pat, I don’t feel joy. Altho I’ve had some of the best times of my life since being diagnosed with mbc in 2011, there are certain emotions I use to have that were completely obliterated, incinerated when I learned I was dealing with mbc. I can remember having those upbeat and carefree emotions, but I can’t FEEL them. I’ve had a few people, not ones dealing with terminal illness, “bravely” tell me oh, they are okay with dying. Well, not me. I’m not ready to say goodbye to those I love, to the seasons, my cats, to my home, the Ohio Valley where I live.
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Hello everyone,
Just wanted to send Pat all my love and best wishes as she launches her new support group today! I know you will provide so much HOPE UP to so many!! Good luck!
Love to all,
Lauren
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Thank you, Nkb, I went directly to my library and put the Gottlieb book on hold. Everything I take out of the library these days is put on hold because I don't have the mobility/strength to root around on the shelves any more.
On the death and dying issue, I have a phone call appointment this Friday to "tell my story" to Compassion and Choices, the organization that works on trying to get legislation passed to legalize physician assisted dying. I've been a member for a while. The chapter in New Mexico used to be quite active but has not been recently. I'm not sure why they contacted me but I guess I'll find out.
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last week I had to get a blood transfusion because after my first cycle of Ibrance my hemoglobin dropped to 5 and I now have neutropenic.I have never felt like that before, weak and I was having nose bleeds, it was awful!! I won't go back on Ibrance until my numbers are better. But I have a question has anyone ever taken Lypo Spheric Vitamin C or Graviola Tea? I want to start building up my immune system and I've been reading up on these two items. This next month my daughter is graduating from high school and I want to be able to attend all the upcoming events leading to her big day and don't want my health to be compromised.
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I was given Anne Lamott's book, "Almost Everything", for Christmas and I'm just now reading this small, delightful treasure. In light of our conversation about dying, I wanted to share this quote with you Dancers:
"...I don't know if my last day will be next Thursday or in twenty years. Whenever that day comes, I want to be living, insofar as possible in the Wendell Berry words, "Be joyful though you have considered all the facts," and I want to have had dessert."
Love from PatGMc
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Pat I hope your group goes well. Please share any thing of value with us. Thanks.
Divine I don’t know how Medicare or any insurance will act or pay clinical trials or different treatment. I hope they act expeditiously bc the last thing we want is a fight with insurance company and waiting for approvals.
Divine you pointed out That you don’t feel joy. Thank you I couldn’t put my finger on it but I did feel joy after stage III. I guess because I was hopeful. And with each passing hour day year until I got the MBC diagnosis I had that hope in my heart and I was joyful in so many ways. I still feel joy mainly in my family etc., but before I felt it more often and there was an expectation of it while bike riding swimming traveling etc. And even planning these things, which I took for granted. Now there’s dread and fear in planning and the big ? Mark will I be healthy enough to go, to walk that far, or Be around sick folks. Yes worry has creeped into some places where joy used to live.
But I still plan and go and sometimes I enjoy it more than others.
Tanya
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Tanya, thank you for your response. It’s kind of hard to describe the way I feel sometimes. It’s not that I constantly feel glum. There are things in life I still love. I even do my best to seek the good things out. And I’ve always had an appreciation for those good things, even before mbc. But since mbc, there is a heaviness that lurks. I can get lost in the good times but only for so long. I’m sure my current mood has a lot to do with the recent progression I've had, the transition to different meds and some other things going on in my life right now that it seems like everything that could complicate life has happened all at one time.0
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Jaycee...do you know about this app called Libby? It will allow you to read books or listen to audiobooks available at your library on your device. No need anymore to go back and forth...you have fifteen days before the books need to be returned, but you can borrow them again....
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Ann273......lots of decisions...your in my thoughts....Cure-ious great info...I want you in my corner when progression happens to me. Thank you for always researching. Patg beautiful0
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Miaomix, I don't do audiobooks. They put me right to sleep. I have a Kindle where I get things I can't find elsewhere like my library or used. But the library is one of the things that really does bring me joy. When I arrive home with a new set of books, I am really happy. My library does have electronic book checkout in a variety of systems. If I get to the point of not being able to drive to the library any more, I will investigate those. I scan over the choices sometimes and just want it to be simpler. I haven't looked in a while so maybe I need to. I'll have to check out Libby, too. Never heard of it. Thanks. Reading is really important to me.
Just looked at my library. They have something called Freading and RB Digital. No Libby. A google search of Libby turned up all good things. Investigating more. Looks like books can be sent to Kindle.
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maybe libby is an app designed for Apple devices only...you would have to find the equivalent for your Kindle...I love to listen to great stories while walking in nearby parks or working around the house with a pair of wireless headphones....Manhattan is very crowded and noisy....so it's kind of a necessity to cancel all those disturbances out, and my eyesight is no longer what it used to be, I struggle to even see those ugly whiskers that seem to sprout under my chin...
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Divine- I know exactly how you feel.
Pat- How did you group go?
Ann- sorry about the progression. Glad Cure-rious has our backs!
Momdin- hope your levels come back up.
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Thanks to all of you who prayed for and asked about the new Memphis MBC group, Hope Up!
It was just perfect and we had Shirley, a 21 year MBC survivor there to inspire us all, especially the newly diagnosed folks. We had a husband/caregiver who felt loved and appreciated by all of us. Our longtime chemo nurse and BC survivor, Mindi got to share how well her patients are doing as survivors of a chronic disease, not a death sentence.
Komen MidSouth did an amazing job of making everything welcoming and comfortable.
My heart is full and I can't stop smiling. (And I wasn't nauseous at all today! Zofran for the Win!)
Love from PatGMc
This is precious Mindi. When my mets came callin' in 2012, my granddaughter sent her favorite American Girl doll back to the company to "get balded". Mindi gave her chemo right along with me and eight year old Lainey was so tickled. Mindi is also a BC survivor.
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yay pat!!! Such a lovely and inspiring post! Amazing how BC touches soooo many of us. Congrats on your hugely successful day!!
I was at a bridal shower today for my cousins fiancé. We are Jews so everyone knows everyone’s business. They all know I have stage 4 MBC even though I never told anyone. Funny! Many women coming up to me and telling me how fabulous and healthy I look.
I saw my aunts sister, who I haven't seen in forever. she asked me how I am and then shared with me she is recently diagnosed with stage 3 breast cancer (hormone positive). I think I was a beacon of light for her as she could see how well I do look and have now been medicating for this for 2 years and still going quite strong.
It just amazes me how many of us are in the “club!” It’s bananas!!! Why why why why why??????? Why are we women afflicted with this disease so much??????
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Momdin-I do take Lypospheric Vitamin C-just one packet per day. I think it helps. I got sick last summer-I think because I was using a public pool that had a lot of babies in it. But (knock on wood), I haven't had so much as a cold for the last nine months.
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Hello all,
I don't post very often because between school, family and work I don't feel I have enough time to do justice to all the things I want to say to all the wonderful women here, but I read and think about you every day and every evening when the busy hours wear off and my mind is mine again.
DivineMrs, I can especially relate to what you're feeling. I can't quite put it in words, but I think I know what you mean. It's not that I can't find joy in life, or love, because I certainly can, and do, all the time. It's just that the "carefree" quality of the joy is gone. There's a "tear that hangs inside my soul forever" as Jeff Buckley put it. Although it doesn't suffocate the happy feelings, it colors them with a melancholy that wasn't there before. Progression would make it infinitely more difficult to pierce through that melancholy veil.
For now, I feel endlessly grateful that my April 24th scan still shows no abnormal FDG uptake anywhere, including the original 6cm breast tumor, the many lymph nodes and the multiple bone mets. I've been on I/L since February 2018, so this is 15 months for me. I don't think I'll get another scan until the end of August - yay!
With that off my mind, I can get back to studying for exams - 3 weeks from now I will be done with my first year of law school!
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Piggy99, your words are very insightful as you describe the feelings and emotions that creep in after an mbc diagnosis. Thank you, thanks to everyone responding to my comments.
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hi all...I wanted to share this information that all of you positive thinkers might find valuable.
Another member, Chicagoan, has started a topic regarding the use of a complimentary protocol that is anecdotally proving to be lifesaving and therefore worth checking out.
If you are interested in reading more about this, here's a link to the story. Good luck to you all
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Yeah to PatgMc for the good response to the new support group. May they continue to go strong and help many people.
ichangedmyname-- It is weird how many of us are getting this disease. Yes, why. Glad you are doing well-- people tell me I look good also. I just smile and say Thank You, and I am thankful for how well things are going so far. But with the aches and pains and fatigue, I sure don't feel like I used to.
Piggy- Wow. Law school. Good for you. Keep posting when you can.
I too have that loss of "carefree" feeling. I was talking with a friend yesterday. I was trying to explain how I felt about my job/career before the diagnosis compared to now. Things have done a 180. My priorities, my thoughts have changed. I don't think I could really put it into words. The "fire" is gone. I have mentally said goodbye to the career part of my life. I go to work now for the paycheck and the insurance. Don't get me wrong, when I am at work I still do my job to the best of my ability, I don't slack off. But my 'career' is done.
And Yes I look through a melancholy veil when thinking of the future or talking in a group of friends that are discussing future plans. I think it is a form of grief for the future I will not have. This MBC is not for the faint at heart.
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Miaomix- I just clicked on the link you just posted. It was too blurry to read. Me? Or my computer? Anyone else having that problem?
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I had a hard time reading it, too - I think because the background is so glaring! I dimmed the light on my laptop screen and then had no problem with it.
Eerie how the story sounds so much like mine (admittedly, I'm short on time, so will finish reading it later...) . My local oncology guy told me I was incurable (yes, me, not the cancer!) once they found the bone met on my spine; gave me an Rx for Femara and sent me home, never even mentioning Ibrance even though he knew I was hormone positive, HER2 negative.
In my case, the second opinion was Sloan Kettering, and that made all the difference! Got me in immediately, and upon first meeting me, the oncologist hugged me and said, "We got this - think of it as a chronic condition to be managed, like diabetes, and I promise to make you as symptom-free and comfortable as I can until there's a cure for this." Fast forward two years from original diagnosis, on cycle 23 of the Ibrance, and I'm doing just fine (NEAD for over a year).
I also wanted to add to any newbies that I live in a constant state of denial, which I think is actually quite healthy. My husband always says, you can worry about dying from this, but if you end up getting hit by a bus someday and dying from that, think of all the time you'd have wasted worrying about the wrong thing!
I've also always had a very ScarlettO'Hara outlook on life - I'll think about it tomorrow.
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Ooh, Ciaci that MO is a keeper!!
Scarlett with MBC? My new role model.
Well, Fiddle-dee-de!!
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Piggy, I celebrate your clear scan and push towards law school. You rock!
I was working my dream job when first dxd stage IV de novo. I lasted another year working but decided to retire because of my age (65) and because I could. My DH retires in a few months and we are looking forward to spending many retirement years together. But yes, retirement does not look like our original plans. It saddens me a bit but I am determined to find joy in what I still can do. Trying to explain my new normal to others is difficult, and the longer I am on this treatment (almost 3 years) the harder i work on not being a burden to others while waiting for news of progression. Some days are tedious and harder than others, but I look for purpose and joy in every day.
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Ciaci- I wish I had your outlook--denial. Your husband is right, we could be wasting our time worrying about the wrong things. And I do spend a lot of time worrying. My family has had some rough times in the past- I have a sister that is disabled. So I tend to look at things realistically. Not doom and gloom, but this is what is wrong and how do we handle it.
I will try the link again and readjust my computer screen.
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Candy, the link looks fine on my computer and my phone but there is that thing at the top about being set up for a mobile device. Maybe try it on your phone? It is REALLY long and starts out badly for me, talking about how you can fix everything with a positive attitude. I'll read it when I have a large chunk of time to devote to it. Like I said, it's LONG.
Congratulations on the new group, Pat. I wish I had something here for MBC people. Is your new group just for MBC? When I go to the general BC group here, I feel like they would rather me not be there. I am their worst nightmare and I remind them of where they could end up. I've never met another MBC person there.
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question for the beehive!!
Has anyone experienced neuropathy from Ibrance and if so, what does it feel like?
The bottoms of my feet have started itching like crazy and kept me up quite a bit last night. I have been having this center of the foot/heel pain that feels stabbing. Started on the left foot and now the right foot too. It hurts when I walk but I do it anyway. The itching is new and making me bonkers!!
Please advise! Thank you!!
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Miaomix: Very interesting story in your link. I was reading about Careoncology from London, and now in the US having success with repurposed meds like Metformin, Atorvastatin, a dewormer, and an antibiotic. It was a dewormer mentioned in your article. I know its not realistic, but I would love it if cancer would be cured with a drug nobody could make millions off of.
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I agree Elena, the truth is: we have so much to gain and nothing to lose from trying, as it's been proven to work for all sorts of cancers and therefore treatments. The author of the blog was being treated at MD Anderson, so it's not a made up story, plus there are no financial gains...everything he usedis over the counter...
The truth is I've always visualized cancer as a parasite, a fungi, a vampire that feeds on living flesh till it kills the host. The whole genetic angle has never made much sense to me, since none of these medications are truly effective, don't perform as expected, and they are quite damaging.
All the mutations and the amplification that are being studied, are the consequences of the illness, and not the root cause of, they treat the symptoms, and that's why we have no cure for cancer after more than 100 years and trillions of dollars spent on research....it boggles my mind....
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Hi, friends. It's probably going to surprise those who have read my posts that I am not one who touts "positive thinking", as though you could or should wake up and just decide to stop being sad and think "positively". That's a lot of pressure to put on a person who is grieving the loss of what seemed like a pretty good life.
My philosophy has always been to try and find ways to replace the thoughts that drag me down with other thoughts.....maybe memories of good times or words of a writer who has gained wisdom on his or her journey. Sometimes I've climbed out of the mire with laughter exercises or music therapy, sometimes with a meditation, most often through prayer. Sometimes it has been through talking with a friend who has been where I am. Many times sitting and listening to my granddaughter speak about her day is enough to lift me.
There are moments when I long for the me who seemed to go through life on a joy buzz, even the one who had Silly Survivor parties but, as I look back I realize there were always bumps in the road... circumstances and people to grieve. My Christian belief is that all things work together for the good of those who love God and that has changed my outlook on this disease and the other life events that could torment me today. I've realized that fear is really the great enemy of joy and I do my best to keep it at bay.
As I did when first diagnosed with BC, with MBC, I seek out every survival story I can find to remind me that there are living, breathing people who once thought they were near death but they weren't. Some of those people read here and some comment. Every time one of you has a scan with no progression or achieves NED or NEAD, a little more hope pushes fear out of my consciousness.
Then one of you pokes fun at life with MBC or heads off on a trip or takes a dewormer and I know that hope won that round!
So, yes, Fiddle-Dee-Dee!
Love from PatGMc
Edit: This just showed up on my Facebook page and seemed so appropriate for today:
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Aaww Patmcg. You've done it again and summed it up. Whatever our belief systems are, Hope has to be there. I too have lost Joy, but take pleasure from the wee things that do make me happy. Balancing out the uncertainty is hard.
It's even harder when you experience, as I did today, colleagues sidelining you in their future planning.... not even being straight up, just not including you at all, which I found out by accident when someone slipped up. After 32 years working for the same employer in different roles... the latest one being fairly high level.....that was very hard as they know the situation ( I’ve carefully managed disclosure over the past year) but I've given no timescale as to when I may stop work. As far as they are concerned I am still at work and performing despite the drugs and the multiple appointments. I have had 5 days sick leave in the past year and no days sick at all in the previous 6years. They have been very supportive re the cancer, and I do think there’s an element of ‘protecting’ me. However I have been very clear that I have so little control over the disease, that I would appreciate having some control over decisions made about work. Made me 😢 and also 😡. Just have to let it all go I suppose .....
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