Ibrance (Palbociclib)
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When I first started Ibrance and Letrozole, I dealt with queasiness and lack of appetite along with other digestive issues. On a whim, I pulled out a pair of Sea Bands (for motion sickness. The box also says for chemotherapy). You wear one on each wrist at a particular pressure point. Within a few hours, my queasiness subsided, and food was no longer repulsive and my appetite returned. I wore them for about a week (night and day) only taking them off when I showered. My hands started to swell (I have lymphedema from the first round of cancer) so I took them off and have not needed them since. I am pretty sure you can find sea bands in most drug stores.
Another thing that may or may not help is peppermint Altoids. These are super pepperminty without much sugar.
Wishing everyone the best!
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Thanks for the tip GoKale. I will definitely keep that in mind for the future. And Cure-ious, your gardens made me smile. Thank you. I needed that.
I honestly think that I got a stomach flu bug 2 days after my last zometa/Fulvestrant treatment. My WBC count is so low, I think it just took a bit to kick the bugs butt. I’m definitely on the mend today. Phew. Just feeling this much better goes a long way to dragging my butt out of funkytown.
Jaycee - you’re in my thoughts and I’m continually sending you good juju. I’m feeling so optimistic about your treatment. It was good to read your posts, so I hope you are feeling optimistic too. And if you aren’t, then lean on us and we will carry you through the rough bit.
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@Candy- yes, I also get scan results on 6/28 - although I have been receiving them in MyChart as soon as they are "ready" - I think there was a new HIPPA law or something that went in to effect in 2021. My oncologist used to release them to MyChart after I met with her. I will be thinking of you when I am in the machine, listening to Foo Fighters (that is my music of choice for scans!).
GoKale, great advice! So far I have not experienced nausea with Ibrance/fulvestrant but I also am not getting any bone strengthening injections at this time.
RRabbit - I am on the West Coast - sending you good energy for your appts and I bet you are there right now considering the time change!
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Rabbit, thinking of you today, are you seeing your doctor AND getting scans today? I appreciate your posts so much. Imagine me in your pocket, quietly reading your favorite book out loud to you.
Also here for pocket readings for AprilGirl, Candy, Katrose and anyone else with scans coming up. I both hate and am grateful for the scans, and yes, when the results now automatically show up in my on-line patient system, I refuse to look at them until I'm talking with my MO. But they sit there, silently taunting me. Ugh. There's so much asked of us, emotionally, throughout this process.
RosieRed and Snow-Drop, it sounds like both of you have had "lost bloodwork", which is infuriating. WTF!
Prairiesea and MKestrel, I had to drop down to 75mg of Ibrance, but I am now doing well on it, bloodwork is all within limits to keep taking each cycle. And I know I've said this before, but my MO confirmed that it isn't the dose that determines efficacy, it's how a person responds.
Jaycee, I think my new mantra, inspired by one of your recent posts, will be Question Everything. Thank you! Sending you lots of good energy with your radiation treatments, and getting off the steroids.
Spookiesmom, I hope you are feeling better from all that nausea. Nausea is just awful. Did you get a chance to talk with your MO about it?
RK, your post was powerful and it's incredibly helpful to hear someone else articulate the things I think, like the fear of a prolonged and painful death, feeling like crap all the time. I'm terrified of that. And Rabbit, that bit about feeling like pieces of you are fading - yes. Thank you for saying that. I can't talk about any of this with anyone really, had a friend recently ask "when are you going to be able to stop getting scans?" and I just can't even begin to educate her about it. Candy, I love that you don't fake it and you are definitely not a drama queen. Although Queendom is something I still personally aspire to.
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The compazine is helping, I don’t feel like throwing up. Makes me sooooo sleepy, may have to split the pill. Will see MO next week. Of course, now my mind is going dark places. I keep telling myself nothing lit up on the PET in March.
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aprilgirl - I’m the opposite. I always want my PET results immediately and my Wisconsin health facility doesn’t post any radiology results in the patient portal. Fortunately, without me even asking, my MO said he would call me with the results as soon as they are available. Otherwise, I would have to wait 3 weeks to see him at my next appointment. I suppose I could request a paper report via the patients records department but I’d rather not have to make the 88 mile round trip if I don’t have to. So very thankful he offered to call me.
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Hey ladies, late night checkin for me. Do you ladies ever feel like you just completed a emotional decathlon coming back from the monthly MO appt? I feel just drained afterwards and just want to lay down and nap for awhile. My MO's not mean, she's nice. Very busy but nice. Its just flashback city sometimes when I see her. After a quick bite to eat (I lose my appetite on monthly visits for the most part) I took a cat nap and felt better. Today was just visit and monthly blood draw and scan scheduling. Bone scan is scheduled for the 1st of July. They tried to say soonest for CT would be July 15th, and the soonest time slot available is a half hr before my next MO appt/blood draw which is also my next Zometa infusion. I said oh hell no to doing all that in one day plus my scan wouldn't of been read yet, not that quick! So waiting to hear back from radiology after MO resubmits in the order as priority. Kinda hate I don't have both dates pinned down yet, just hoping I don't get a surprise can you come in tomorrow type thing. Apparently both CT scanners where I go are mega busy. Wonderful. Hope this doesn't mean rushed sparsely worded reports again. It's funny how some radiologists are more wordy than others in reports or leave stuff off that others leave on. So still waiting for CT date, will report back when radiology gets back to me. Limbo, I'm in Limbo...and my heart beats so I can barely speak...And I seem to find putting me in Limbo is what they seek...As i'm Ibrance dancing and squeaking cheek to cheek.
Thank you for all the suggestions for the nausea. I'm breaking out my secret weapon. Peppermint/Spearmint tea - called Plantation Mint by Bigelow. (I think someone on here suggested mint too, forgot who, eek). Going to brew a bunch and then let the majority of it sit chilled in the fridge for as needed use. This stuff helped get me through AC chemo so if it helped there its gotta help with Ibrance. Compazine I found made me really loopy, like barely hold my head up loopy and Zofran is like gorilla glue to my insides so I really try everything but those two things- they helped keep my face outta of the toilet with chemo but they definitely exorcized my digestion system in very interesting ways.
Cure-ious, thank you so much for those! That was a wonderful pick me up to come home too. Between you and RK I have been spoiled. I adored all the pics and especially enjoyed that little caterpillar capsule, too cute! I loved the smudge pot and the citrus. I'm going to have to look those up as something new to learn about (smudge pots)
Aprilgirl, I don't know how you are able to address everyone and remember to but you do it so well
Funkytown is the pits. I told my MO today how thankful I am for my group, kinda got teary eyed about it too, about all you ladies. Not being alone, especially in funkytown helps a lot. It really does. I'm playing "Everlong" and "Hero" by the Foo fighters as I type Candy and Aprilgirl in the scanner the same day??? Now...what are the odds they give me a 25th CT date too...I hope they do!
Jaycee - i guess its a question of deciding if i can live with current SE I can predict or possibly add new ones. Also a question of if i want an extra needle stick to the arm or a stick to the butt...decisions decisions...cheering you on with your last zaps.
Cakes
"when are you going to be able to stop getting scans?"...kinda sounds like "when are you going to stop treatment"..."your going to be okay, right?" - trying to explain just causes a glazed look to cast upon their face. they don't understand, but we do. Unfortunately we do. I will definitely picture you reading to me in one of my upcoming scans, probably the bone scan, as I'm almost nose to machine during part of it lol Thank you so much for your kind words, it really does mean a lot to me RK- hoping the flu bug scrams for you soon!
I agree, feeling good or feeling better physically helps keep funkytown at bay or start to go away. I'm an immediate results type gal too. I go to medical records right after each scan and sign a release to have my reports emailed to me as they are released. Jackie, always thinking of you
It's the weekend and I'm settling in to a Ray Harryhausen marathon
Woo! XOXO Ladies Preparing for a early morning call on Monday with my TM's. I hope I hear from radiology first tho. Put me in the CT on the 25th please please please. Maybe it will be good luck for us
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Quoting Jaycee49, "there is not a doctor worth his salt who cannot get an insurance person to CHANGE THEIR MIND. They have to write an extra email, make an extra phone call, push for the patient. I have had doctors do just that. It can be done. Don't let doctors use insurance denial as an excuse to let patients suffer. At least ask."
Agree 100%, and if I might add: Call your insurance company yourself. When my job at our pharmacy was to get things paid for, I started by calling the insurance company, and asking "What do you need, from the doctor, to get this approved?" And take names. My standard opening was, "This is Elaine DiSanto at Camacho Pharmacy, who am I speaking to?" (I know it isn't grammatically correct, but "to whom am I speaking" sounded pretentious, and didn't get the same results, LOL). And use their name during the conversation. For some reason, they're always more helpful if they know that you know who they are! I always kept track, and had a list of people at each insurance company we dealt with, who were more helpful. After a while, I would ask for them only, and got far better results!
It's ridiculous that we sometimes have to jump through hoops to get our drugs, but I hope these tips help someone.
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My last MO visit was scheduled for 1. First after lunch right? He was 30 min late, but did apologize saying he was on phone getting a scan approved. Nothing I could say, thought yay doc!!
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ciaci - great suggestions! This tip can be used for many types of problems. I always get names but sometimes not until the end of the conversation. From now on, it will be at the beginning AND I will use their name in conversation (assuming that I can pronounce it lol).
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Rabbit- Wishing for you for the 25th too. I caught your song.... The Green Mile.
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candy and Aprilgirl for pocket duty for your scans on the 25th. Rabbit I hope you get that date too.
Crawling out of the bed at 11:00 today dragging myself out of funky town for a bit.
Tany
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Candy - crossing fingers
Yep you caught the reference, except with a tweak...squeak...:) Such a good movie. Ciaci, I'm taking notes!
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Can I just chip in Jaycee and Ciaci... totally agree. RK2020 and others joining in also. We have to advocate for ourselves always, but there are times when we are too ....TIRED!
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I thought of all the dancers when I saw this. ❤️0 -
RK, I love that rabbit and bear so much! Thank you for sharing that, yes, just sometimes need the bear to sit with me.
During the first year we were dating, my husband gave me a tiny little porcelain bear with his arm around a bunny. We have given each other bears and bunnies every year since, he was going to get a near-life-sized bear statue for the yard but I thought it might freak out unsuspecting neighbors, lol.
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RK2020 - I also love the rabbit and bear! Thank you so much. Hope you all have a wonderful weekend, celebrating fathers or father figures.
SF Cakes - I will be heading to SF/ East Bay this fall. Would love to meet you in person if you would you be interested! Not sure if anyone else on here is in that area?
Dance on!
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And now, for something completely different (Monty Python!)...great news, a new paper in Nature reports the development of a pollen-sized nanoparticle with a chemical that counteracts the pesticide malathion- a "vaccine" that provides 100% protection for bees!!! Amazing...
https://www.goodnewsnetwork.org/bee-vaccine-to-pre...
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Cure-ious that is good news for bee 🐝 thanks 😊
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Karenfizedbo15 - AGREED. I was trying to think of another way of explaining perhaps the lack of umph to jump the hoops sometimes. Freaking tired a lot of the time. There may be wind, but no energy to pull the sails up sometimes.
RK- that's a keeper
Cakes - a life-size bear for the yard might increase the pinecone population mysteriously. Wait, these aren't pinecones..oh boy.:)
You all won't believe this but i got a call from radiology bright and early this morning. "Excuse me ma'am, this is radiology calling to schedule your CT Scan, the soonest we can give you is June 25th at 11:30am, will that work for you?" "That's awesome!! Yes!!" I replied back. The lady had to have been confused and then she really must of been confused when she asked for the questionairre what I'm having the CT for "Oh, Stage 4 breast cancer, checking for progression" in a light hearted manner...must of been quite the morning to hear someone with Stage 4 cancer chipper about having a scan. lol. So ladies, wonder of wonder, miracle of miracles, I'm in the CT with Aprilgirl and Candy on the 25th. My Bone Scan is on July 1st, that's sorta almost an all day thing. Let scanxiety begin, I'm probably going to be quiet, not get back to peeps until these scans are past, following along, but with zipped lips. Deep breaths, we can do this!
Edited to add: Here's hoping for no flight of the bumblebee tootage while on the table, I always worry about that.
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Rabbit- Maybe good vibes for you, me, and Aprilgirl having scans the same day. I will be thinking of you and her while I am in the CT and MRI scanners.
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I can’t believe we have 3 dancers being scanned the same day. I think it’s a lucky charm like a 3 leafed clover. 🍀
I’m on my way home from my PET. Already read my results in the portal. It looks to me like I’ll be continuing the Ibrance dance for awhile more! I’m a bit miffed that my PET exams and other records from Moffitt never made their way to my facility in Wisconsin. Because of this, the comparisons had to be made to an October scan, not my last one in April. Nonetheless, I’m quite content reading the report. Still some action in my left sacral region that we will have to keep an eye on but nothing appears too concerning to me. I’ve already requested that this PET be sent to Moffitt. Let’s see if it gets there. I’ll be sending a portal message to my Moffitt onc to let them know it on its way.
Dance
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RK2020 - love the scan results in the portal and congratulations on good results!
Rabbit and Candy - I do believe that 3 of us on the same day is the best of luck and it makes me so happy (which only y'all can understand). I do believe it's a sign that we are in good hands and today, I feel less scanxiety than I typically feel leading up to the scan. Can't imagine working as the tech/person that has to stay chipper while saying "checking for progression/stage IV cancer". UGH.
Karen - I agree. It is exhausting to constantly advocate. Sigh.
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RK, poking out to celebrate good PET results for you. Congrats
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RK- Congrats !!!!! What we like to hear.
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RK 👏🏿 congrats on the good pet
Pocket duty for candy rabbit and April Friday.
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Woo-hoo, RK! Great news! Hope you can relax and enjoy your beautiful yard.
Definite pocket duty for Rabbit, Aprilgirl, and Candy this Friday. I'm with you.
And yes, Aprilgirl, please let me know when you're going to be in my part of the world - if it works out, it would be lovely to meet you! In person! Because I was diagnosed during covid, I have yet to physically meet another person with MBC. Hopefully if I jump up and down you'll understand...
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meetups are such fun. Hope it works out!
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RK, Congrats on the good news from your scan!
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Candy, Rabbit, and April, have you in my thoughts and prayers for the upcoming scans. And so happy for the good news for RK.
I meanwhile am completely confused by my oncologist. Last week at end of Cycle 2 of Ibrance on lowered dose of 100, had very low neutrophil count that I had to call to get Onc's office to pay attention to. They decided to decrease dose to 75 and said go ahead and start the next week (thja. I said, without checking the ANC count again? Last time it went down further after my week off on Cycle 1 at 125. So I had another test today. It's gone up a bit, to .60, but not really enough to get started again. The real shock, though, was that he wants to talk about shifting to Verezenio. I feel like we don't even really know if Ibrance can work. I was to have another Tumor Marker test next week (first one did show a decline), and he's put off scans until August. Verzenio also has, I understand, rather bad gastrointestinal effects, and I already have trouble with that. I have put a message in to my 2nd opinion Onc, who had promised to follow up after looking at the images he didn't have access to in April but never did, so have asked him to weigh in on this too. But it seems so odd to be so sure that we can go ahead with a dose reduction oen week and then suddenly want to change drugs after only two cycle when another dose reduction would be possible.
AND just as I was writing this the 2nd opinion Onc called. He thinks Ibrance is working (I guess he looked at report of my thoracic MRI from last week which seemed to show no real change from MRI's before treatment) and it makes sense to stick with it, but feels local Onc should call the shots (personally I would prefer he call the shots and local, rather young and inexperienced onc, would just follow). Anyway, he gave me some options to think about and discuss with local onc. But I know many of you (SF-Cakes for example) struggled with neutrophil counts and Ibrance at the beginning and then had good results at 75. Anyway, your experiences would be helpful to hear.
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