Ibrance (Palbociclib)
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Oh Rabbit! Excellent cure for funky town. I had tears run down. Showed DD she did too.
Thank you❤️❤️0 -
RRabbit and BAP - keeping it real! those videos are definitely a cure for funky town, haha! Ibrance keeps me on the verge of constipation, less on 75 mg.
SondraF - my jelly roll pan is like a cookie sheet with a raised edge - the one I use is 17 x 13 inches.
RRabbit - ohhh I want to watch the Stor of the Century", sounds good. I love Stephen King.
Sunshine99 - keep us posted, we are here for you! Hope your video appt went well.
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So I had my appointment today (I REALLY like her). She will order an MRI just to rule out anything new going on. I've been having more frequent episodes of strong deja vu, followed by a wave of nausea. I feel kind of out of it for good while afterwards. Hopefully it's nothing. I've have these "episodes" before, but not this strong and not with this frequency.
She's not sure that the tingling is caused by the Ibrance, but we'll continue to monitor it. Otherwise, everything looks good.
Fortunately, gas has not been an issue with me. My husband is the expert in that department. haha Reminds me of a story in one of the James Herriot books about the farting Boxer who could clear a room. He was owned by a very proper British lady and it was becoming very problematic. She ended up giving the dog to an old farmer who absolutely LOVED the dog. Turns out the old guy had lost his sense of smell as a kid. How perfect! The lady ended up getting a lap sized poodle. Perfect ending to the story.
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Rabbit, oh wow! That hippo video had me in tears! I definitely have suffered from some extra worse gas. My DH moved the fan to his side of the bed to blow my “stench” away from him 😂 I also love Stephen King. I’ll have to check out Storm of the Century. ‘It’ was my favorite growing up.
Sunshine, I am so glad you have an MO that you like! I hope you figure out the tingling, that can be so annoying. I try to explain mine as feeling like static on the tv looks.
April your pumpkin roll looks amazing! I’m currently watching the Great British Baking Show (it’s my comfort show, it makes me so happy!) and watching them do rolls, wow I do not have the dexterity for that!
RK and Rabbit, I have chemo brain as well and I’ve also noticed it getting worse. I get so embarrassed and frustrated when I forgot words. It makes me feel stupid. And with COVID and spending a year home alone, my ability to concentrate goes up and down. I love to read but I’ve had months of being unable to read more than a page or two.
Rabbit and Cakes, I had a bilateral mastectomy with immediate reconstruction so I don’t know the feeling of not having a breast. But my reconstruction does not look good. I was supposed to have surgery in May 2020 but then COVID halted everything. So now I just stare at uneven hamburger buns that don’t hang the same and no nipples. It’s a constant reminder and makes me feels like less of a woman.
Thank you all for always brightening my day and speaking my feelings. It’s comforting to know I can be myself here. Sending happy thoughts
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Rabbit, lololol, hoo I needed those laughs!! My favorite is still the deer tooting. For those who haven't already heard from me about this, Ibrance has created noises from my rear end that have alarmed my neighbor (in his yard), caused security guards to come running (at work), and interrupted virtual groups I'm in. I find it mostly hilarious, unless I'm feeling sad about all my body/health changes...and then a loud toot reminds me I'm still alive and perhaps I should go have a snack?
Also, my sleep has improved! I am now taking a combo of cherry juice (delicious in fizzy water), an antihistamine recommended by my doctor (chlorphen-something), and a few drops of a CBD/THC tincture. Going at this insomnia with no holds barred! But am finally, finally sleeping 7 hours or more at night. Such a relief. This whole experience, or shall I say shit show, is easier to do with some sleep.
Love to you all, getting more statues for my yard, will share photos when they arrive! ❤
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Things are moving very fast here with axilla U/S and biopsy today and breast surgeon consult appointment tomorrow. Radiologist showed me what was up - actually my primary has not increased it is just my old friend lymph node and his new buddy (and a third very small one just behind them not picked up in the scan). The biopsy hurt like a MF - like a slug got shot into my armpit and ribs. Im very curious to find out what all this means, along with the implications (obviously!).
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SondraF - in your pocket for the consult tomorrow. Hugs.
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Hello, my Ibrance sisters:
RRabbit, thanks for calling me out -- I finally started dancing yesterday, October 19. I've had my tablets for a week, but held off starting because about the same time I got them, I learned I needed a root canal. Took care of that in the afternoon, and took the Ibrance at 9 pm, shortly before bedtime. Bedtime was suggested by the specialty drug pharmacist. If it turns I have trouble sleeping, I'll move it to morning. My MO has started me at 100, due to my body size -- 5'7" and 130 lbs. I'll go in for blood tests on the 28th.
LGP, my BC was originally ER+, PR+, HER-. The bone met I have showed ER+, PR-. HER-. My MO told me the ER+ was more important for responding to the drug. I hope he's right. Also, Guardant 360 showed I have a CHEK2 germline mutation (I already knew I was BRCA-.)
Melatonin -- I take 20 mg each night about an hour before I go to sleep. My integrative oncologist (also my ovarian cancer oncologist) suggested it. Melatonin also was anti-cancer properties, so I figure it helps at least 2 ways.
SF Cakes, I so understand your thoughts about next year's garden. I planted garlic last weekend, something I've done every October for 25+ years. And I found myself wondering if I'd be able to prepare the bed -- the weeding, the composting, the tilling -- much less the planting, next year. But by Jove, I did get to do it this year on a lovely fall day, so that's something I'm grateful for.
What I'm not grateful for is the cost of Ibrance, but my oncology team is working on that problem. This first round came free as a "trial." But if I get many cycles out of it with good results, I can't complain too much.
Love to you all and in pockets for scans,
Ann
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AnnTop,
Are you on Medicare or private health insurance? If you are on private health insurance, you can get a Pfizer Co-Pay card and your cost will be nothing. I paid $150 co-pay my first 3 months b/c I didn't know about it, but have paid nothing ever since.
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I don’t pay anything either, my MO office got me set up.
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been on ibrance letrozole combo 3 years now. original tumor died (they removed just a sliver of scar tissue about 1 year after diagnosis)...large bone mets are dead and I had one tiny lesion in a rib that was radiated but bone scans show uptake and while it is diminished are uncertain if the uptake is cancer lesion or something from radiation of the site (I have to find out why radiation 1.6 years prior could possibly make bone scans show increased uptake at the site?).here is my 15-3 marker is pretty constant at 25 for awhile now.
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Filabrasile - That happened to me. I have a spot on my spine that was zapped (SBRT) in 2019 that continues to show a "diminished" uptake on bone scans. My radiation onc looked at CT scan/MRI and was fairly confident it was radiation healing/damage, not recurrence (at least in that location). It will likely take other scans for you to confirm if it it is recurrence or not, as the bone scan won't give you that detail. Best wishes!
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Chicagoan and Spookiesmom - so great that you don't have any out-of-pocket expense for Ibrance! I am considering leaving my job (retiring early, I'd like to say) and going on Obamacare. Looking at options online is confusing because I would like to move to another state as well for better weather and healthcare options. Some of the insurance options appear to not cover prescriptions or do not cap the out-of-pocket costs. So hearing that Pfizer has a co-pay card is great news. I wonder if Eli Lilly Co also offers this for Verzenio just in case I change meds?
Filabrasile - that's great news that your bone met died. Do you think it was the meds or radiation that took care of it? Here's hoping that the spot on the rib does the same thing.
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SondraF - in your pocket for your appt today. It's a relief when doctors move fast but can be overwhelming in my personal experience.
My Ibrance copay of $2000 is covered by Pfizer. We are covered under my husband's corporate job. I am very thankful for this coverage as I just noticed my 30 minute zoom call with my oncologist (post pet/ct review) was $5500. Geez.
I am also a 6 month planner but I do have tickets to a Rugby World Cup, France 2023 - living wild, I tell ya! Just tickets to the games, no flights or anything else booked. I am visualizing making that trip and still being on Ibrance - perhaps with an oral serd (please!).
Hope everyone is doing as good as we can be!
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Today was the intro to the breast surgeon chat and she was so... calm. Very zen, I liked her a lot. She had a quick look/feel at Frankenboob, my armpit, and my abdomen and recommended single mastectomy with axillary node clearance, DIEP recon and then rads. Im cool with all of that (no surprises) but a little scared by the DIEP. No need to do the double mastectomy as its a lot of extra surgery/recovery for no material gain. Next stop is plastic surgeon chat, so I figure I will raise my recon questions with him. I know there is of course the option to go flat on that side, but after spending two years trying to manage the asymetry and bra denting, Id like a 'return to normal' as it were.
Estimated surgical date of somewhere between Nov 25 and 30th, so about five weeks to get my act together on a few things around the house and sort out work leave/wrap up current projects. Where I work the year is essentially over in early December anyway but for the Christmas parties, so this won't be too disruptive.
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Sondra-Glad that your consult went well and that you feel comfortable with the plan. The timing does seem to be good-enough time to get things organized and then to be able to recover over the holidays.
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Sondra that sounds great! So happy that you're finally getting taken care, and by someone you like!
Well I just did my mid-cycle bloodwork on Wednesday and my MO emailed me today to ask me to go do bloodwork again next week. Apparently my blood counts are low, so not only does he want bloodwork on the counts, but also for iron and vitamin b-levels. I hope my levels don't look too bad or they rebound. I really want treatment to work so I can stay on this line for awhile.
Feeling a little down....
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hey guys another quick question!
I just had my first bit of bloodwork done. I’m on week 3 (day 15 I guess) of my first cycle. They wanted blood work done after two weeks due to history. Everything was fine basically but my platelets took a dive from 250-103 in two weeks. I’m nervous they’ll drop further this last week and they’ll not want to start cycle two or go down in the dose. I’ll have 5-6 days to rebound before bloods are done again. I know that this is a common side effect. Does this happen to many of you without dose reduction ? Does it tend to bounce back quicker ? I only ask cause it’s basically my only option open to me at the moment.Thank you !
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Katyblu, I can't remember, are you on 125mg? That's very common. I did 125mg for one cycle and then went right down to 75mg and still had to take a break sometimes. Ibrance really messes with the neutrophils. I was on it for two years and two months. Hope you rebound next week.
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Chicagoan and SpookiesMom, yes, I am on Medicare with Humana for my Part D drug costs. So Pfizer Co-Pay is out for me. DH and I were frugal and have pensions, so now in retirement we have just enough resources _not_ to qualify for help. But I guess that's not a bad problem to have. The Ibrance will be $700 a cycle out of my pocket through year end, and then I'll need to go thru the donut hole again, which means some $1000s out of pocket in January and February -- assuming I'm fortunate and will be continuing on Ibrance. There's still the chance my oncology pharmacy will find me some help.
B-A-P, when my platelets tanked after starting a PARPi/Zejula, I took papaya leaf as a supplement. It seemed to help build my numbers back.
Best to all for the weekend!
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I’m on Medicare with a Humana Advantage plan. It doesn’t seem to be income related. Your MO office should be able to help you, or call Phizer direct.
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BAP - my first cycle at two weeks I was good for blood but by the end of my off week I was low on neutrophils, and complaining of certain side effects. Its not uncommon to have it happen on 125 in the first cycle and if you are lowered a dose (or held a week - I was) don't feel like you failed or anything
Its better (and safer) for you to be at a dose that works for your blood and where you dont have to keep taking breaks.0 -
My first cycle of Ibrance at 125mg tanked all my bloodwork, my platelets crashed to 30, and I got a fever in my off week and was admitted to the hospital for IV antibiotics as a precaution. I was so sad and scared, thought it meant I couldn't be on this med. My MO was basically like, well, you certainly had a reaction, didn't you? And said we would restart at 75mg. Which I've been on ever since, platelets have remained at the low end of normal, and of course WBC and neutrophils are low but within range to keep taking it. I couldn't believe that taking one little pill for 21 days could wreak such havoc in my body! These meds are powerful, hopefully powerful in the way we want them to be.
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thanks for the responses so far ! I’m on 100 at the moment but I am tiny. So maybe 75 is a better dose for me. I mean they’re 103 right now so nothing too dramatic but I have a week left of pills before the break.
It’s been an eventful day. Had my fulvestrant injections and I get them done by two nurses at the same time to get it over with. Left side came out fine. She took it out of the right and my leg went dead at the glute and I couldn’t stand or walk for a couple of minutes. i did discover my bilirubin was 9 today and 8 weeks ago it was 85 and failing. So I’m calling this mostly a win!
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B-A-P - I don't know the answer to your questions but went back to MyChart and looked at my platelets from when I first started.
From what I can see mine dropped from 281 when I started Ibrance to 159, two weeks later. 2 weeks after that they were 205. So they will go up some on your week off but I don't know what # your MO will become concerned and hold or reduce dose. My most recent platelet count after 1 week off was 152 (almost 2 years on Ibrance with 2 dose reductions). My oncologist has never mentioned my platelets as a concern but has held my Ibrance or reduced it due to low anc.
SondraF - sounds like a great plan! I can't decide with Covid if we will have xmas parties this year so it could be a good time to recoup. I wish I lived closed and would bring you pumpkin roll and drink some eggnog or tea while you recuperate;)
Katyblu - hang in there! I had to dose reduce fairly quickly due to low white blood count/anc.
AnnTop - nice to know about papaya leaf as a supplement, I will check that out!
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thanks April Girl. We are watching them carefully since I had a varicies bleed and because I have a clot In my portal vein causing ascites. So she was hoping they’d hold a bit so I could start taking a prophylactic dose of a thinner. I guess I’m concerned what the last week will do but perhaps it’ll hold. So I’m not gonna focus on it too too much since there is an option to reduce the dose.
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Thanks KBL and Aprilgirl! Yes I am currently on the 125mg. I guess a dose reduction isn’t too bad. I was just hoping to stay on the max but listening to everyone here, it’s good to know the other doses are just as effective. Hopefully my numbers look good next week.
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B-A-P , great news on your bilirubin numbers ! That is fantastic
We are getting much needed rain in Seattle so I am going to enjoy the day ...perhaps bake :
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Thinking of you, Rabbit, as I know you have scans (at least one scan) coming up this week. I'm sharing this Duran Duran video for you because it makes no sense, and is basically batsh*t crazypants (kind of like MBC, I figured). Simon LeBon was never known for lyrics that made sense, my brother used to loudly protest when I'd play their records! Hoping for a good, stable, uneventful, boring outcome for you ❤
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SpookiesMom -- you were right about income, I guess. I got a call a couple of days ago from my specialty pharmacy that Pfizer would be sending me my Ibrance for free through the end of the calendar year. They'll also help me reapply in December for 2022. I was very pleased and grateful. The pharmacy does great work to get its patients financial help.
I've only just started week 2 of my first cycle, and will have blood work tomorrow. Fingers crossed my numbers haven't tanked too much.
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