Ibrance (Palbociclib)
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Candy-678, thank you !! I know she will be attending "virtually" so am hoping the same thing .
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Checking in, monthly visit went fine, went over scans, essentially stable so staying course on Ibrance 100mg, I'm on lucky cycle 13 now. Sometimes I wonder if at least some of my fatigue isn't emotionally based, just hard stuff to deal with. And to dovetail to what other ladies have brought up. I realized not this appointment but last appointment I cannot "bring out the humanity" in me with my MO. Me sharing anything emotional or personal about me that kinda takes away the cancer patient veil and puts a flesh and blood human being front and center struggling with this disease isn't received warmly. It makes her uncomfortable. I know our oncologists probably do need to distance themselves for sanity's sake, especially those of us Stage 4, however....there are just times I want to show there is more to me than just my diagnosis. I echo BevJen's sentiments "I often wonder where the humanity and emotion lies in all of this." Early on I could try to lift the veil, now I can't, I could see her emotionally attach to me for a moment and then immediately snap back. Part of me understands, but part of me finds it hard. Nicolerod probably has the best MO on the planet, a 2 hr initial consultation and a MO who call you on vacation...JEALOUS. So, to curb my disappointment I just keep things matter of fact and kind and just save the rest of what i'm thinking for you ladies because 1. you understand and 2. there are sometimes being a cancer patient entreprenaur advocate and expecting everyone including doctors to "get it" is just tiring and i'm just interested in the vampires taking what they want and going on my quasi merry way, less time at the cancer center = happier me.
I guess I am a piece of meat, or a piece of buttered and jammed toast, lightly mind you, not burnt (btw, that lady who had made the reference to toast awhile back is very kind, I reached out to her privately, think it was a genuine misuse of words not meant to be pejorative, i kinda spun it around a bit, morbid twist perhaps), either or. Quality of life over quantity has and always will be my thing. That's why I've decided when Ibrance doesn't cut the mustard anymore I'm lowering the landing gear. Not interested in doing a few months long sputters at that point being heavily treated going into this rather quickly and I've done the chemo thing, granted I've done the dense dose hellhole stuff so I have skewed perception. I found the article shared great. These are just my thoughts and I know every person and situation is different. I think its all really a matter of choice and I think that choice lies within and should be respected.
I'm not really great at understanding the science of it all, i still haven't found enough adequate information to understand my genomic mutation Keap1 which I know is rare in breast cancer. Eh, on the otherhand, maybe if I understand too much it might just keep me up at night more. For me I'm having to learn to balance knowledge, reality, and optimism, AND not channeling snl's debbie downer syndrome which can be an easy trap when the reality is sometimes things just suck... Take care ladies
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Hi Miss Rabbit...I've been reading some of your blog again. It's very touching and some of it had me bawling my eyes out and blowing my nose. I think it's great that you're writing down your thoughts. I've related to so much of it. Thanks for sharing it.
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Jackie, thank you very much for the compliment, sincerely
I think I've blushed a bit PS, I finally found out the mystery of what those rabbits are called that drove radagast's sleigh in the hobbit series, thus my name update. Brave, gutsy things.
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Rabbit, I saw the name "...rabbit", but I didn't think it was yours until I saw your profile picture. I thought someone had "dropped in on your wave" as they say in surfing. Then I saw your profile picture and I realized that all was right with the world, after all. I'm going to have to research the rabbit names. I read some of the Hobbit books years ago, and recently started reading The Fellowship of the Ring.
Thanks, everyone, for brightening my day. AND, some good news on my dose reduction from 125 to 100. I was on day 21 of cycle 6 (cycle 2 of the 100 mg). My ANC was 1.67!!! It hasn't been that high since before I started Ibrance. White cell count is still a little low at 2.6, but I'm thrilled with the ANC number. No pauses for now.
I've probably asked this before, but does anyone else track their numbers on a spread sheet? I love spread sheets... All those tidy little boxes - haha. It's the one thing I can control in my life. Even if I don't like the number (like my weight log), I still have neat little boxes for each number. I even color code the "too highs" and "too lows". Call me weird, but I'm happily weird.
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I love spreadsheets. I put EVERYTHING in them. Ask me how much fluid was removed in my 6th thoracentesis. I can look it up. The name of the nurse? Also in there.
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Another spreadsheet person here. I don't track most of my numbers since they are tracked on MyChart but I track the dimensions of the size of my primary tumor. Last scan the radiologist thought there was progression-not according to my spreadsheet-the height and width vary each time based on how my arms are stretched. I also have been tracking the daily covid stats (New cases and deaths) in my state. I do find it weirdly comforting.
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I use spreadsheets for loads of things: grocery list, to do's, lab results, weight, appointments, etc. I LOVE excel. I've been using that for probably 30 years and I'm really good at it. I find spreadsheets so useful. My grocery list is in the order the items are in at the store - too anal?
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I wish the Lymphedema therapist I see would use a spreadsheet to track measurements. She uses paper and it is very difficult to track over time. Also hard since each sheet only has room for a few measurements. Would it be rude to make a suggestion?
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My DH is the spreadsheet king.... and it’s catching🙄. I do put all of my practical stuff to do with finances for us and elderly parents etc. into excel. Stopped short at the exact amount of fluid extracted from my lung and by whom though! 🤷🏼♀️That info is in my head ( 1.2 litres and Dr Mark who was a gem!) 😊.
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I don’t use spreadsheets. I just keep my ANC in my Notes app each month. I never did learn how to use Excel. Congratulations on the improved ANC. That’s great.
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Karen, the doctor who did the procedure is in there, too, but they are less important than the nurse. I kept track of the fluid extracted because I was trying to convince MO#1 that it was going away. The amount of fluid was less each time. (I had six.) He kept ordering them because he was looking for a cause of the PE in the fluid. He did every test in the book. He never found anything including cancer cells. The pulmonologist he sent me to said the PE was RELATED to the cancer, whatever that means. Sister? Uncle? Brother-in-law? Cousin on my mother's side twice removed? OK, I'll stop.
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Jaycee,
You will appreciate this (not related to your PE story...)
I submitted to my doctor to fill out the Pfizer forms for assistance (through Pfizer, not a foundation) on 11/18. Supposedly, around 11/20, my doc's office submitted to Pfizer via fax, after having filled out the doctor's part. Radio silence from Pfizer, so this past Tuesday, I emailed the Pharmacist who supposedly submitted the forms to Pfizer on 11/20. Someone there told her that the forms were incomplete, so she re-faxed them on Tuesday. The next day, someone at Pfizer said the forms were all there (including the original set) but that the ICD code was missing. The Pharm gave her that on Thursday. Still waiting. Of course, I'm about to buy my next set of Ibrance pills and hoping that they get their act together first. They said if I was approved in December, it would run through 2021.
Wondering if any of the Pfizer statements were true, or if they are just getting slammed as people realize how much more Ibrance will be costing retail in 2021. Gotta love Big Pharma.
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Sounds typical, Bev. A few years ago, I decided to try Pfizer assistance. I got approved in maybe November. I didn't use it because I got a new PAN grant and they are so much easier to deal with. I got a notification from Pfizer that my assistance period had ended in December. At that time (I don't know what it is like now), Pfizer assistance was good for a CALENDAR year. You needed to start in January to get a full 12 months. Jan-Dec. If you started in any other month, it would still end in Dec. I would check on that. Your MO's office should know that. Unless the rules have changed or the kind of assistance you are getting is different. I'm glad you are eligible now.
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Jaycee,
In the course of the back and forth with Pfizer, one of the reps told my center's pharmacist that since it was already December, I wouldn't have to re-apply for 2021 -- once approved (still waiting, people) it would be good for the coming year.
Public service announcement to anyone else who needs/wants to apply, though -- it seems to take a little bit of time to do this, so get your apps in soon even for 2021.
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So it sounds to me like your assistance will start in Jan? That may be why they are dragging their feet. Just a thought. They are so devious. But waiting until Jan. will help you so that seems unlikely.
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Jaycee,
No, the pharmacist at my center had the impression that it would start before that. But who knows? I would have restarted Ibrance today, but I have a repeat liver ablation on Friday, so my MO has me holding it until several days after that, so we'll see how it goes. If I have to do a December order, I can get it from the hospital pharmacy pretty quickly.
And yes, as you know, under Medicare, it's the January payment that's the huge hit because of the way that Part D is structured. But with the increase in the retail price for 2021, every month will be a new adventure, with my payments even after I come out of the donut hole being almost $1,000 a month. That's ridiculous.
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Followup on my last post -- I got "the call" from Pfizer today. They have approved me for their program. I am to get two boxes of pills on Wednesday of this week -- one for my December cycle, and one for my January cycle.
Jaycee, they also told me that in January, they re-review everyone's apps for 2021. She said that it takes some time -- thus, the two boxes of pills. At that time, if I understood her correctly, they will try to get a foundation to pay for my drugs (odd, considering what you've posted in the past about the foundations getting $$ from the drug companies) and failing that, I will be approved for free drugs from Pfizer instead.
For this inquiring minds who want to know, she was very nice and very chatty on the phone -- was willing to explain the whole Part D thing to me if I needed it, but I already understand it, so that wasn't necessary.
I am beyond thrilled to get this drug covered for however long I can!
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BevJen,
Thanks for this update. I still have private insurance to cover my drug costs but I think that will end in a few years (provided I am still alive). You, along with Jaycee, are great resources for getting through the maze of bureaucracies to get drug payment assistance. Glad you will be getting help in paying for the Ibrance.
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Big Pharma's profitable philanthropy
"Half of America's 20 largest charities are affiliated with pharmaceutical companies" that fund copayments on prescriptions for drugs that they manufacture, said The Economist. The drug companies set up the charities to defray the costs of copayments on expensive drugs, but this has "the fortunate consequence of making their customers price-insensitive." The charity run by AbbVie is the third largest in the country, while Bristol-Myers Squibb runs the fourth largest. In total, 13 companies spent $7.4 billion on these programs in 2016. Having copayments gives patients incentive to stick with the companies' drugs instead of opting for cheaper generics — ultimately helping the drugmakers' bottom line. The companies can then deduct up to twice the cost of their donations from pretax profits.
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Jaycee,
Yeah, I get it. I just had to laugh, though, when the caller went on and on about how they would "work with" a private foundation to continue to get my drug covered.
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BevJen, that’s awesome. I will be faced with decisions for October 2021, as that’s when I’m eligible for Medicare. I hope you don’t mind if I private message you then to ask you a few questions. The hoops we have to go through to keep living are worth it but a pain in the a**.
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Okay, something amazing happened and I just had to share here because this celebration of mine is only something you all would understand. I have slept the last 2 nights completely on my own without any sleep aid, natural or otherwise. I've slept in 2 to 3hr increments but only with help for over 2 yrs. The last couple nights I've slept 7 hrs. 7! No help! 2 nights in a row! I sat at the edge of my bed both times in morning in shock and then I cried. It felt so good to sleep on my own. It was a bit of normalcy I'm not accustomed to and it just felt great. Maybe its a stupid thing to be so excited about, but to settle in and drift in my bed and not feel wound up so tight I could produce a diamond is a great little victory. I'm going 3 for 3 tonight. Even if the trend doesn't continue, I've savored the last 2 nights, Just thought you ladies might understand this kinda joy.
I've decided I'm going to call myself a strider....not a thriver, or brave or a warrior. I don't like any of those. I'm just going to stride to get through each day a smidge better than the next. No pressure that way. Totally corny probably but I'd like to have a word retort I'd prefer to be used so I don't have to cringe at the other labels the next time one is tossed at me.
I was a spreadsheet gal, but my brain just doesn't cooperate in the same ways it used to. I did one of those tests recently where it tells you which side of your brain your dominate on. I went from a righty to a lefty. I think chemo did that.
No worries Sunshine
I may have dropped the Radagast and became a Rhosgobel, but I'll always be Rabbit Candy, thinking of you during scanxiety leading up to the 21st scans.
Hugs Jackie, Aprilgirl, RK etc. I can't believe its almost Christmas, November sure went by quickly
I turn 39 in January. Another Christmas, Another birthday, thankful Love to you ladies
Ciaci hope to see you check in soon
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Rabbit-- Yes, we get joy from the simple things. Happy you got some good sleep on your own. Hope it continues. Thanks for the well wishes for my scans. I am really getting nervous. I am thinking this may be the time for progression. Just a feeling. I hope I am wrong.
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Rabbit, that’s so awesome. I totally get where you’re coming from. I’m so happy for you that you got sleep. You have reason to be excited.
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Rabbit,
Yay for sleep! Go for number 3!
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Rabbit, Great news on the two good nights! Keep it up!
Candy, I hope you’re wrong too. With you in spirit on the 21st.
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Good for you Rabbit and I too would be delighted to hear from Ciaci!
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Yay Miss Rabbit! I totally hear where you're coming from. Unfortunately for me the last two nights I slept horrible. I sleep for 20 minutes, wake up for an hour, sleep for 10 minutes, wake up for 30...you get the idea. Plus I have achy/restless joints that bother me. But the night before that was an amazing long and unbroken sleep.
Strider...I like that. Hugs back to you!
Candy...prayers sent for good scan results.
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BevJen, I ordered Ibrance a week ago and today received 2 boxes. I was totally confused since this has never happened before and there was no explanation with the usual papers that come with it. Are you saying that they automatically review patient's aid for renewal?
Rabbit, so glad you were able to get some good sleep; it makes such a difference. May it continue.
Candy, I feel anxious about progression on my upcoming scan too, more so than the last one. Maybe because I've passed the 1 yr. mark of being diagnosed with MBC and, at that time, was convinced that I wouldn't live to see another Christmas. May our worries be for nothing. Good luck to you and I am hoping for good results for both of us.
Hi to everyone else. Hope everyone is enjoying the Christmas lights and decorations. They make me feel peaceful.
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