Ibrance (Palbociclib)
Comments
-
Hello,
I've recently posted here to find out about the possibility of a change in HER-2 status but since that post my mom has learnt that she has been HER-2 negative since the beginning.
Anyway, now that it is clear that she is in fact HER-2 negative, the common recommendation is for her to be put on Ibrance, but I am wondering if there are others here that have had diffuse liver mets, elevated liver enzymes and those mets were symptomatic (rib pain, fatigue) and they have had succes on Ibrance? She also has multiple bone mets and a lung nodule that has been there for quite some time even before the bone mets so I guess it's not malignant. The doctors are reluctant to see her state as a visceral crisis so they don't recommend chemo, but I've seen some posts with women that have had extensive diffuse liver mets that have been treated with Doxil.
0 -
KBL - I dunno what it is about them but a couple weeks ago UPS delivered my Ibrance to the wrong house, when the driver went back to get it to bring it to me the homeowner had brought it inside and went to work. I eventually got it later that evening when the homeowner returned, but boy was that hair raising in the meantime. UPS lost package 2 to the chair so now MIL (she had gotten it for me as a gift) is in process of getting refund and we'll re-try with different company. I really don't like UPS. If i'm going to have a package delievery problem 9/10 its with them. Or Lazershit...I mean Ship.
RK- thank you thank you! Exactly what i needed to see
Enjoy that pool, still super jealous! Cakes - Will be here for pocket duty next friday! Stable Mabel or Regress Regina! Look at your little garden and I love your new garden residents
I'm going to try to grow a mini herb garden to cook with in my window ledge. I'm a pretty good cook when i have the energy, cooking with fresh herbs sounds wonderful, so i'm going to give it a whirl. Lawnmowing is my crack, struggling to do it this spring/summer unlike 2 previous. I've been watching lawn mowing videos on youtube, gotta get my fix somehow if beloved is going to have to take over lawn duty. At least i can smell the air after he's done. Fresh cut grass smell = heaven. Candy - I wish you didn't have to wait and marinate so long in limbo. Hoping next couple weeks fly by so you know whats what soon. In your pocket 25th and 28th.
Glad the question of hair has come up concerning Ibrance. My issue is the ends of my hair. The growth stops and starts so much that my hair looks like a child with a pair of scissors got ahold of it and the ends are brittle and dry. Will have to give biotin a more concerted effort. Biotin shampoo sounds good, i'll be on the hunt for that for sure.
Jackie, Aprilgirl, thinking of you ladies.
0 -
Hello MBC friends!
So many new names since I last posted here. Way too many of us in this mbc club. I have had so many constant issues that I don't always have the energy to keep up with all the posts, but I think of all of you each and every day!
So, I was stg 4 de novo with lymph nodes as my only met in 2019, within one year was diagnosed with colon cancer (surgically resected no further treatment), at the same time I was found to have mantle cell lymphoma - did 6 mos of chemo and that's in remission. Been on letrizole the entire time and ibrance on/off depending on other meds. Currently on ibrance for about 9mos. On my PET scan from last week, I have a new nodule on my chest wall (so, most likely progression). My doctor is suggesting to switch meds to affinitor, but I guess I was thinking that falsodex is the next line of defense. Obviously need biopsies and such, but who's up to speed on the latest meds?
Your thoughts are appreciated!
KelQ
0 -
Good morning Ibrancers! It's a beautiful morning here in the Pacific Northwest. I am working today but hope to have Sunday and Monday to relax and enjoy some time off! I have been doing fine but possibly in a bit of a MBC funk (heavy sigh) for no particular reason...except the obvious! See my MO on June 2nd for blood work and faslodex jab and then on to cycle 17 or 18!
KelQ - good to hear from you - colon cancer, lymphoma and MBC is a lot for one woman to have in a year and I am happy that you handled it all well. I am not up on the latest tx with possible progression. Definitely a biopsy would be in order, if it is obtainable. I look forward to reading the advice from others that have more info on this - how do Oncologists know what cracked open the "window" for a progression, the letrozole or the ibrance?
RRabbit - so great to see your posts and hear your humor mixed it but HOLY COW your step mother in law is a real piece of work! UGH. Your beloved's mother, on the other hand, sounds lovely and I am so touched that she planted purple irises in your honor and they are glorious this year. Can't believe UPS has lost half of your recliner (gift from the lovely MIL I think?) and UPS has more than once had mishaps with your Ibrance delivery. UGH.
SondraF - Congratulations on Stable scan results - plus regression! WOOHOO! I love that you will be rollerblading to celebrate!
Candy - I am sorry that you are waiting for the next appt and kind of in limbo. Hoping your oncologist has some great plans for your treatment coming up to get you back to stable. In your pocket for scans on 6/25 and MO meeting on 6/28.
SFCakes - your garden is beautiful and I LOVE your bear and bunny! Sweet. Happy to hear that 75 mg is working well for you. Pocket duty for you and scans next Friday!
GoKale - I had a fair amount of hair loss when I started and now I have 4-5 inches of new growth popping up all over (my hair is just past my shoulders so it's odd looking when I start to blow dry but eventually calms down. I don't know if the new growth is from my lower dose of Ibrance or just my hair getting used to Ibrance? I have heard lots of positive comments on biotin.
JACK5IE - let us know what the MO has to say after you meet on June 1!
Cureious - thank you again for your knowledge. It is comforting to have you science expertise to keep us up to date!
Bootsy - I hope you get some answers and get the back pain in control, AND that pain is not related to MBC. You have had so much to deal with, sending you prayers that Ibrance and Faslodex do it's magic and be easy to tolerate.
Jaycee, we are all sending you prayers and healing energy.
Mary0512 - I don't have any info for you but am confident others will post soon.
Chicagoan, RK2020 and anyone I missed, thinking of you all as spring turns to summer! I changed my avatar to a collage of flowers in my yard. I do have some serious joint pain in my hands (thank your faslodex- but am enjoying my blooms!).
0 -
Thank you aprilgirl1!
Grateful for the knowledge of so many and the willingness to share.
To all having a difficult time I send every good thought for the help needed.
Nice week-end wished for all.
0 -
Hello everyone. I haven’t posted in a little while. However I read daily and hope everyone is doing well in treatment. Lately folks have commented on hair loss. Recently I am noticing the opposite without doing anything different as far as shampoos, supplements,etc. I’ll be starting my 23rd cycle. Has anyone had hair loss on their arms and now is growing back? In addition my hair texture feels like my pre cancer hair. I hope the I/L remains working but any change whether it be good or bad makes me wonder. Hopefully someone can chime in... thanks.
0 -
Not my arms but I seem to be sprouting leg hair lately like there is no tomorrow. Maybe Im losing track of time or something but I swear to god I look down and its all long and practically curly again not a week after shaving (or at least what seems like a week). Like there isn't even a prickly phase its just insta-Yeti.
0 -
Sondra: I read so much about hair loss. I haven’t heard anything about hair growth. Even though we have different body parts going on I’m glad to here someone else has noticed a change. Often when I read about hair loss and then growth it’s usually about folks off treatment or a change in treatment. So I hope my treatment is still working. Crazy how the mind goes into a tailspin. My scan isn’t until next month. Boy do I miss the days when little things didn’t bother me. Thanks again for your response...
0 -
Hi to Ibrancers,
My first box of Ibrance 75mg. which I am to start today is dated exp 5/2021. Would like to ask if anyone knows if expiration date matters.
Is that OK to take through June? I know some meds exp.date can be pushed out longer but, not sure about this one.
I started Faslodex on the 24th. Haven't had anything different in the way of SE..of course 1 week is maybe too early to see any.
My blood count is low...so starting Ibrance is a bit concerning for me.
HCT 25.7 - HGB 8.5 - Platelets 122 - RBC 2.73 - RDW - 19.3 - Neutrophils - 1.8 Neutrophil% - 32.0 - Lymphocyte % 61.6
any thoughts??
Hope everyone is having the nice week-end.
0 -
Hi to Ibrancers,
My first box of Ibrance 75mg. which I am to start today is dated exp 5/2021. Would like to ask if anyone knows if expiration date matters.
Is that OK to take through June? I know some meds exp.date can be pushed out longer but, not sure about this one.
I started Faslodex on the 24th. Haven't had anything different in the way of SE..of course 1 week is maybe too early to see any.
My blood count is low...so starting Ibrance is a bit concerning for me.
HCT 25.7 - HGB 8.5 - Platelets 122 - RBC 2.73 - RDW - 19.3 - Neutrophils - 1.8 Neutrophil% - 32.0 - Lymphocyte % 61.6
any thoughts??
Hope everyone is having the nice week-end.
0 -
Bootsie-I would check in the pharmacist regarding the expiration date. Also, the number that seems to matter most is ANC-Absolute Neutrophils. If you have any doubts on whether you should start, check with your oncologist. If it was me, I would probably take the pill and not really worry about it but do what you need to do for peace of mind. Good luck!
0 -
bootsie, I would sure check on that expiration date. As much as that drug costs, no one should be sent an expired supply! I am also on 75 mg. and have been tolerating it pretty well in spite of the fatigue and hair loss. Good luck to you!
0 -
Ibrancers - how's it going?
JACK5IE - how was your MO appt yesterday?
SFCakes - in your pocket for scans this Friday!
Bootsie, did you call about the expiration date? Let us know what they had to say about that. I agree with Lee, for the $$$ we should get non expired meds- geez louise.
April showers brought May (and June) flowers - my May flowers are in my avatar. I was a bit down in April (no serious reason) but feel more upbeat right now. Might be the weather? Might have been due to a sweet rabbit I saw in my yard;) Had my monthly oncologist meeting plus blood work and faslodex shot. Blood work was good (anc 1.24) so Ibrance #18 started this evening. Nothing new to report. Qtrly scan at the end of June.....
Hope all are well and enjoying the start of June!
0 -
Aprilgirl1
I did call on Ibrance expiration. Let me clarify that this box came from my MO office as a sample. Pfizer advised me not to take it even though it was just expired 5/21.
I guess the potency goes down and I would be taking it the 3 weeks in June. The nurse I talked with at my MO office this morning said I could have started it Monday as scheduled.?
Just told her I wasn't comfortable with that.
I did get approved today for assistance for this extremely expensive drug. Thank goodness.
I took my first capsule at dinner last night. Went to bed with stomach not feeling well. 4:00 this A.M. I started diarrhea .10X til 10:30 A.M.
Nurse at MO office didn't think it was from Ibrance. I assure you it was!
She said stay hydrated (of course) and take Imodium. It seems to have quieted down so will hold off.
Blood work next week.
Thank you checking. Love the Avatar of flowers.
To all who are not feeling the best - nervous about scans - etc. I wish only better days.
Welcome lovely month of June....Going to go prune & water my flowers, let my bare feet feel the earth..
Bootsie7
0 -
Mary, I am no longer on Ibrance but I do check on my friends here from time-to-time. I had considerable bone, lymph node, and liver mets de novo five years ago. I was put on Ibrance for four years and did well and spent most of that time with no active disease. I had slight progression a year ago and was switched to Xeloda and am doing well once again. We are all different and there is no way to tell ahead of time whether we will do well on a drug. I would encourage your mom and stand just be with her. You are an awesome daughter to be so involced.
As far as hair: My hair thinned a great deal while on Ibrance. I also was able to stop shaving my arms and legs. Now on Xeloda my hair has grown back and I shave again. My fingernails also have grown back strong as they got very weak. There are other SEs on Xeloda, but Ibrance was a good first-line medication for me.
0 -
bootsie7 - I take Ibrance in evening with a small glass of milk so it won’t upset my stomach. Maybe that will work for you. One night this past week I took it with water and I paid for it with a lot of tummy troubles the next day. Ended up missing a coworker’s goodbye lunch. I was so bummed.
0 -
Interesting read, sadly too true. He tried, and nobody would take it. My practice pharmacy would have taken it. And given it to some who needed it.
0 -
Bootsie, for better absorption, it is better to take capsule with food including protein, carbohydrates and fat (calories more than 600) you might want to see this information here:http://labeling.pfizer.com/ShowLabeling.aspx?id=2191
0 -
Thank you Rabbit and AprilGirl for the pocket duty during my scans today! CT and bone scan. And lab work. And a scrumptious chai latte from their little coffee shop.
Was blessed with wonderful technicians today. I allowed myself to tell the bone scan tech how anxious I've become in the past when the big square scanning thingamabob is an inch from my nose. She stayed in the room with me and let me know exactly what was happening, asked if I was okay, told me how many minutes until my head would be out from under there, and I didn't get anxious. I have told myself in the past 'this is so not a big deal so suck it up' but decided today to admit I've been anxious and ask for help. It made a huge difference, and I thanked her profusely for her kindness. I can't always handle everything with aplomb, sometimes I'm just a blob. It's good to ask for what I need.
Grey, foggy kind of day here by the bay. Going to make some pasta and cheesy bread and watch Lego Masters! Sending love to everyone here ❤
0 -
IntoLight, I bet we'll see you return to Ibrance someday, sweet friend. If you progress on Xeloda, (especially since your Ibrance progression was slight) I hope you'll stamp your foot and insist! It's good to know you're doing well.
SF-Cakes, I'm sending you my word-of-the-day award for using "aplomb" in your post! And you used "thingamabob" to boot! I'm glad your techs were kind. I imagine it would be hard to be unkind to someone as charming as you!
Cure-ious, I'm excited about the possibility of immunotherapy for you! I'm a believer that they'll sort it all out and we'll each get one someday but I'd love for you to lead the parade! I'm going to have my Guardiant360 (sp?) checked to see if we're the same kind of mutant!
I'm sending hugs to all of you while adjusting to the return to 100mg as Nausea and Fatigue hold hands and dance around me. These two art commissions are not doing themselves so I need to get up off my bottom and work! I donated some pieces to our Grief Center's auction and that felt good. Being unproductive is one of hardest things about being in this MBC predicament and those of you who still go to work and care for little children have my undying admiration. And you who are gardening in the hot sun.....Wow!
Love from PatGMcCouchPotato
0 -
Evenin' Dancers
Just checking in! MO appt isn't til the 18th for me for blood work (later in the month than usual for me) and I know i can't put off scans anymore so those will be scheduled that visit. I'm just hoping i don't get the yanking pulling bone scan tech again, ouch. I'm happy to report i do have a whole recliner now, not the original one that was intended, this one is better I think. Its wonderful on my back. Multiple levels of massage, heat and power reclining plus lift to standing. Its a Gem. My beloved wanted to try it out and liked it himself. Heck one of our cats liked it. I caught one of our cats laying on my chair upside down looking at me in extreme comfort. Then I heard vibration and looked over at the remote all lit up. The cat had turned my chair on and decided today was a spa day for her. Something tells me coins will be tossed between my beloved and the cats on who's sitting it when I'm not, ha!I do want to second the magical leg hairs that reappear so quickly after a shave. I am convinced my thinning hair on Ibrance is migrating to my legs and my CHIN, omg, plucking dark little hairs on my chin weekly. i pluck them, they just reappear over night as if i never plucked.
I'm just about a week into cycle 19. I can't believe I am a "veteran" at this already, seems like it wasn't long ago i swallowed my first pill. No sores on cycle 18 and no sores thus far on this cycle. Dry mouth here and there. Fatigue. Gas explosions. The usual suspects. Feel like someone need nearly tap my head and i'd go "Boom!"
Bootsie, welcome to the thread and to the Ibrance dance, you'll do great! If you have any questions about side effects let us know!
I found taking Ibrance with a substantial snack, like greek yogurt, cottage cheese, peanut butter celery, or cheese, crackers and fruit helps my tummy be happier than just taking it by itself. You said in your post you took your first capsule. if your taking Ibrance as capsules you definitely need to take with food. Ibrance as Tablets they say you can do with or without food, but have found my tummy gets upset and extra gassy if I don't eat when i take it. Aprilgirl - Loving the flowers! It's okay to visit funkytown, we all do from time to time
You and I aren't far behind one another in terms of cycles. The dance continues. Olay! Jackie, check in soon lady
Getting a little worried my friend. Candy - still waiting in limbo with you!
Spookie - I hope more places will adopt recycling unused cancer drugs, its such a waste to not give unopened drugs to cancer patients who need them. I felt sad for him he was trying to do good even while grieving.
Cakes - woo! thank you for checking in post scans. I'm glad you spoke up. That box does get awfully close to your face when the bone scan starts. I biggest problem is I want to watch on that little screen so once the head is done i keep trying to peek over but i can't. Close up shots i can, but I have to wait 25 mins for the whole body scan to be over to start really being able to see anything. #inpatientscanner. Pasta and cheesy bread sounds good, enjoy- you deserve the night off...weekend off?
It's supposed to be in the 90's all weekend here and unfortunately beloved needs to work half day tomorrow because they are slammed. He's bringing me a gourmet topped waffle with the fruit and the nutella and the ice cream and the whipping topping and the.....well loaded on his way home as a cool off treat. Meantime I'm living in the air conditioning. Hot flashes plus scorching weather makes you thank God for freon! No do se doing around the lawn with my mower in this nor my beloved, 70's mid week. I'm going to be naughty and try and do some myself, don't nobody tell on me!
Last night I thought, while Ibrance is an amazing drug, I wish there was a cancer drug that could give us a few years of what we had before all this, no nausea, no weight gain, no thinning hair, no pain, no sahara va jay jay's, just plain normalcy, just for awhile. I wish that more than ever right now, if I could just have a couple years, even a few months back of life before all this, of what I had back. Pipe dream I wish could really come true. Stay cool this weekend ladies - perfect excuse for something with an umbrella in it!
Pat, do you have any new masterpieces to share? Also, do you do commission work? Like if someone asked you to make something and had a theme in mind and paid a fee, do you do that?
0 -
Just tossing in the voice of experience, as the wife of a pharmacist who was not allowed to take back any drugs for redistribution. For those of you in the US in the early 80s, if you recall the Tylenol cyanide murders (7 people were killed when an unknown assailant laced unopened bottles of Tylenol capsules with cyanide), that's why. It sounds compassionate to donate unused meds, but once those medications leave the pharmacy, their purity cannot be vouched for. From the day the ingredients for any medication are purchased, there is a fully-documented chain of custody until that drug is delivered to or picked up by the patient. It's called the pedigree. Once it's at your home, there is no way for anyone to verify what was done to it. So yes, there probably are groups or physicians that will redistribute drugs, but as far as the DEA is concerned, it's illegal.
0 -
Hello all. I am still doing the Ibrance Dance, at least until the 28th when I see my MO (25th for scans). I fear my Ibrance days are coming to an end. My liver biopsy from the end of April came back ER- now, with weak PR+ and I have had some small progression of the liver mets. But, for the moment, I am still on Ibrance.
Rabbit- I laughed at your post about your cat and the recliner. My cat knows how to turn on the kitchen light (takes toggle switch in mouth and flips up) so he would probably be like yours and be enjoying the vibration of the massager. Also, thanks for waiting in limbo with me. I agree with wishing we could keep the cancer at bay with a med that makes us feel like our old selves. No joint pains & stiffness, thinning hair, constipation, gas, fatigue. Oh, to feel like my old self, sigh...
Ciaci- I remember the Tylenol fiasco. I understand the need to be cautious. But, with the cost of these meds, it would be nice to be able to donate unused portions to someone in need. I dropped my Ibrance pill the other morning and it rolled under the refrigerator. I was worried my cat might get ahold of it, but also, at $600 a pill, I was not letting it go. I moved the fridge, wiped the dust bunny off the pill, and took it anyway.
0 -
I agree that it's sad that we cannot donate our unused meds, but totally understand the reasoning. I have an unopened box of the 125 tabs as my MO switched me to the 100 dose just when I had ordered the 125s. The 125s are sitting in my cupboard. The nurse at my MO's office said to just keep them in case we need to up the dose again.
My pharmacy in my grocery store does have a bin when you can drop off and dispose of unused medications. I need to do that with my old pain meds that I never took. I never remember to grab them when I'm leaving for the store. They're locked in a file drawer, so it's not like I see them every day.
0 -
Rabbit - That is one smart cat! They do know how to get comfortable.
Ibrance MBC question - Many of you post that you are on Ibrance and MBC. Did you start Ibrance when you became MBC? My DR took me off Ibrance when my cancer took an ugly turn and became MBC. First my arm blew up. Scan showed cancer seemed to be everywhere, then pleural efusion sent me to the ER. For a year prior, the tumor had been shrinking, a little. I wonder if the Ibrance would hold the damage at bay even if it can't get rid of the cancer. I do not think the exemestane/Afinitor is doing anything. Just finished 18 rounds of radiation, burnt and sore, but swelling has gone way down. Radiologist DR had me quite Afinitor during treatment. Mouth sore immediately went away. Scalp sores gradually went away Started taking 1/2 dose, SEs (scalp sores) immediately started coming back. Regular oncologist suggest I stop Afinitor while she reevaluates.
0 -
BlueGirlRedState, are you saying you were taking Ibrance before your cancer was metastatic? Were you part fo the trial they put together for early-stagers?
0 -
On the topic of unused Ibrance, I was given my first bottle of Ibrance by my MO’s nurse on the day of my first ever appointment with my MO. It had part of the sticker torn off, presumably with someone’s name, but the nurse showed me that it was still sealed under the cap. I actually appreciated not having to wait for insurance approval and shipping and felt ok that it was still sealed. From Ciaci’s post I realize this was illegal per the DEA and I’m now surprised it was done. I assume someone had been moved to a lower dose or discontinued it and turned it in.
0 -
Bluegirl, my arm swelling is so similar to yours. I have an appointment with a radiologist on Wed & hoping that radiation will bring down the terrible swelling in my arm/ hand - also caused, they think, by cancerous tumors in the neck, shoulder area. Mine is painful too, so hope it can be alleviated by radiation. 18 rounds.. Did you go every day? Glad your swelling went down & hoping the burns heal quickly!
My best to all the " dancers."! What an informed group!
0 -
I was at a get-together this afternoon that involved some of my husband's former colleagues who are still practicing pharmacists, and I asked if any of them know of any donation programs besides the ones that were set up then we still had our store (at that time - almost ten years ago - pharmacies could donate cancer drugs that were unused and had never left the pharmacy, for instance, if they were ordered but never picked up, but consumers could not). They said a couple of states were trying to get programs like that up and running, but due to liability issues, they didn't know of any that were actually operational. The drugs would have to be donated to a pharmacy or drug program, then verified to be "pure", and the pharmacy would have to take legal responsibility for any unwanted outcomes. Of course, everyone knows of doctors who accept donations from patients and re-distribute them, but, unfortunately, it isn't allowed.
0 -
Supporting Initiatives to Redistribute Unused Medicine (SIRUM) is an organization that may accept unused, unopened cancer meds from individuals. They redistribute meds to uninsured and/or low income people. I think they may just operate in California? I haven't utilized them, but their mission sounds pretty cool.
https://www.sirum.org/individuals/
0
