Ibrance (Palbociclib)
Comments
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Ciaci, thank you. I’d already read your intial post and that’s actually what prompted me to question the whole statin thing! Since then spoke with nurse who advised trying to stay off statins and also discovered high cholesterol is an SE of Letrozole! Tomorrow morning I see my GP and she’s pretty good, so we’ll see.
Nice to hear from you Jaycee
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Karen,
I would be really interested in what your GP says about the statins. It is one of the Care Oncology drugs recommended to block cancer. When I asked my GP about it, she looked at my records and said that my cholesterol was fine, and that she would not prescribe a statin for me. She feels that it will mess up my system since I don't really need it. This is a person who, when asked about Metformin, couldn't write the script fast enough (although I am pre-diabetic, so perhaps that made more sense.)
Please let us know! Thanks.
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Cure-ious and IntoLight...I dropped down to 100mg in September. I didn't really grow any hair back. It may be slightly better but nothing at all to make me jump up and down. Mine never really grew back great after chemo in 2009. I'm thinking because of the TAC cocktail. But good luck to both of you. I hope your locks will be flowing once again!
Faith...good luck with your PET scan tomorrow! I'm getting a Bone and CT scan tomorrow.
Jaycee...I'll be getting my results the same day as you. Prayers for all of us getting scans and results!
Re statins: I switched from Lipitor to Crestor because of all the negativity around the Ibrance/Lipitor combo. Don't know if it was necessary, but I did it anyway. If you don't have to take a statin, don't. They have their own slew of side effects.
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I am giving Ibrance a try starting tonight after being on Verzenio for about 17 months. I got really tired of dealing with daily multiple diarrhea....and then it got to the point where I could not tolerate eating basically anything green! I am starting at 125mg, but now I am wishing I had advocated starting at 100mg. Well, I'm giving this a try.... I understand hematological SE of Ibrance...I got neutropenia only once while on Verzenio, but that is not common like it is with Ibrance from what I understand. I have loved my Verzenio holiday since 12/27! But time to move forward...All the best scan results for you all. I got the all clear a few weeks ago on my PET.
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Chemokaze,
Good luck with your treatment on Ibrance. I just started my cycle 6, and it's been a fairly easy treatment for me. I've been on 125 the whole time, and after the first two cycles, I can predict when the fatigue will generally hit (around days 13-16 of the cycle it's the worst) and my other side effects have been fairly easy to deal with. Hope that you find it easy as well.
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Chemokaze, remember that the D from Verzenio may linger and you may want to blame Ibrance. You need to wait for things to stabilize before blaming Ibrance for the D.
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Hi all,
I have been diagnosed with ONJ, stage 1. I recently had a root canal done on a tooth in my upper jaw. The ONJ is in my lower jaw, not even close to any previous dental work. I have no pain, just an area where my jaw bone is showing. The treatment for stage 1 is to rinse with a antibiotic mouthwash. Surgery will be the last option.
The Oral Surgeon said that you can get that years after stopping xgeva, zometa, etc. I don't want to scare anyone but wanted people to be aware. You can avoid surgery if caught early and are able to keep it under control. Make sure your dentist knows what to look for. Unfortunately my old dentist did not, we might have caught it earlier.
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Ibrance users:
What metrics does your DR use to measure success or problems, when, and how frequently? I'm on Cycle 4 day 9. The main SEs seem to be fatigue and some hair thinning. I think the stiffness in fingers is from the Arimidex. The brand name seems to have fewer/less intense SEs than the generic. My DR ordered a PT scan (had one as diagnostic before starting Ibrance, no metastasis). She ordered one a month ago, but insurance denied it. So she has ordered a CT. Have yet to hear from insurance. She does a blood check on day one or so of NO Ibrance. WB low, but not alarmingly. Metastasis is a worry, but I also need to know the Ibrance is working, because, so far, nothing has for me. This is round 3 of BC for me. The DR feels that each episode is a new one rather than recurrence, but when pressed, admits there is no way of knowing. 2009 left breast, dense lumpy (right normal), lumpectomy, two nodes removed, radiation, 5 years tamoxifen; 2016 Left again, chemo, bi-lateral (my choice, no reconstruction), 2 nodes left removed, tamoxifen (started with anastrozole, quit because of SEs); 2019 swelling in right arm (opposite side of lymph gland removal. Scans, biopsy revealed cancer in axilla. So now on Ibrance. DR feels very confident that it will knock out the cancer and that surgery might not be necessary. She has mentioned radiation as well.
Foods to Avoid with Ibrance. The literature and pharmacist both said no grapefruit. Another pharmacist said no pomegranate. I had not heard of lime or asparagus being a problem - is it? Pomelo - isn't that a grapefruit cross? I was also told to avoid marmalade since it might have a grapefruit-orange cross.
I marked the start/end day on the bottles to help track as well as using a food/exercise journal. I eventually recycle after removing any PI.
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BlueGirl -- My wife is about to start Cycle #8. Her main SEs are fatigue, hair thinning, and joint pain. For her, the main metrics of success are scans (although her MO is also monitoring TMs). She had her first post-Ibrance scan in September which showed "improvement in all tumors". We're having discussions now with her MO about how frequently to have additional scans to assess progress (or regression): the recommendation was initially every 3 months but her MO is now (mysteriously) saying that every 6 months may be sufficient. Fortunately our insurance will cover either. Good luck.
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Good afternoon ladies
I'm well into cycle 3 now, still at 125mg, doing alright, SE kinda are non existent which is okay but worries me. I was receiving monthly Zometa since June but MO is switching me to every 3 months for a bit then twice a year. Seems to me MOs are pulling back on the Zometa now, seen lots of women have issues with ONJ or crumbling bones with long term use in other Stage 4 groups...concerning but know everyone reacts differently and some do well with Zometa. Pain is still there, just live with it and try to take things slow so I don't move wrong and tweak something. I have tricks to dress lower half of me, if all else fails I can ask hubby, but very much want to be able to care for myself. Probably should be using cane or something but not ready to go there yet, my stubborn streak will remain in this regard until I can no longer remain stubborn. In the queue for MM card. Sometimes I stand carefully in the shower and let hot water hit my back, hoping it will ease the muscles around my spine which has been singing especially in very cold windy weather. Try to drag myself from the cold to warmth as quick as I can otherwise a blast of wind stops me in my tracks! Simone, I'm so sorry about the ONJ, I wish it could of been caught for you sooner. I will definitely take your advise to heart.
Tonight I'm making some shredded chicken tacos with lots of fresh veg, including homemade pico, cheese, and plain Greek yogurt as sour cream. Roasting some potatoes too with lots of herbs and spices including cumin and chives. Leftovers will provide lunch for me and breakfast potatoes for hubby.
Sometimes I get the impression my MO is surprised to see me there each month. I hope I surprise a lot of people, maybe even myself
Pic of Vera and Violet with me. Dog has ditched me for the pellet stove lol
Edited to say: Was just reminded that I do have a SE to report. Gas. Biggest side effect i've had all 3 cycles so far. No mouth sores so far this round but i'm cutting muffins left and right....very embarrassing when you're out and about, aisle dodging isn't exactly easy with spine mets sometimes
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Thanks BevJen, my tumor is still IDC, "invasive carcinoma". Back in 1998 they reported my tumor with a mix of "Ductal carcinoma" and "lobular carcinoma focal". They don't specifiy in the new report (don't know if they can) so I will ask. i remember lobular as being able to go to strange places too.
THANKS, NINA
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Miss Rabbit...you made me laugh so hard that I had to tell my husband. He loves a good fart story. You were "just reminded" and "cutting muffins"...hysterical!
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I have found the ultimate mascot for ibrance dancers ; sub group flatulence suffers. [ I like hippos, it was a nudge from pinterest. This makes me giggle, but i have an infantile sense of humour!!]
Be warned this link is not for the anyone easily offended or feeling queasy at the moment- you have been warned.
https://www.pinterest.de/pin/390335492703644098/
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lol Jackie! I was on my way to the kitchen when the reminder hit, it was then the AI fog lifted and I remembered my silver lining doing the Ibrance dance. Gas! I have a running joke with another stage 4 sister, “Have a tootiful day!”
Denny!! Lmao!! I think I might of done that watching that, not the poop part but definitely the gas part! Ugh it feels good to laugh! That is our mascot for sure!
Anybody seen that Jim Hensen movie Labyrinth? Well, just call me one of those farting rocks from the bog of eternal stench!
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Well, for those who picked up my cholesterol/ statin post, my GP wanted to refer me to the Lipid clinic. This especially as my mother died 3 years ago from a previously undiagnosed heart issue and had been on statins for years but got off them latterly. My father also has a cholesterol problem, neither parent issue was dietary or due to being physically inactive, although my father drinks way too much.
I have a good diet and am as active as possible! However when I told my GP I would be against a statin prescription ( thanks to Ciaci I could give an example!) we decided together to leave it 6 months...I will further improve my diet and try drinks enriched with plant stanols etc. We know too that Letrozole can impact on cholesterol and it seems my genes have a lot to answer for. The very last thing I need is to be crippled movement wise as I’m already stiff and sore! I suppose if I can’t get the levels down I will need to take whatever meds, but I will make sure my MO is totally on board and pay attention to what you are all saying on the subject.
Wouldn’t it be just bloody ironic if I keeled over from a heart attack or stroke before the cancer got me! My very good friends and fellow PE retirees were laughing with me on that one.
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I blame my husband when I accidentally fart in the store. He gets so mad. Lol
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Karen,
Well, it sounds like you've got a good compromise going with looking at things again in six months. My MIL had very high cholesterol, but ate very healthfully. The doctors always said it was genetic, and that sounds like it could be your issue as well (well, that and letrozole.)
Good luck!
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Hey, girls (and Husband)! I stopped in to peek at you all and see so many familiar and treasured names still posting. I think of you all so much.
So far, so good with me. Still bone mets only (everywhere throughout skeleton). Ibrance/Faslodex failed for me after 23 months. This past January they put me on Xeloda, which has been relatively benign for me (except for HNF side effects). I just had a PET scan this week, and all is stable so far. You may or may not remember that in Feb I had a skin met (first ever and only so far) up in my hairline, and it biopsied as triple negative. I'd always been ER+ until that biopsy (since 1991). My onc thinks that I'm probably ER+ in some spots and TNBC in others. BUT, they have to treat for worst case.
We sold the Wisconsin boat in September (worried about falling on the ladder to the flying bridge) and bought another. Hope to head out for adventures in VT and the St Lawrence Seaway areas and then down as far as Key West, if we can just keep this blasted MBC in check for a while.
Huge hugs to all of you....and stay well and moving....
--Lynn
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Hey Joyner L nice to see you sailing along. Enjoy your future adventures.
Tanya
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Happy New Year again to you all! Still laughing about the hippo and muffin !😂🤣
I have a new question. Did anyone end up in the Medicare Catastrophic Coverage last year and if so can you tell me how much you had to pay out-of-pocket for Ibrance once you hit that level ?
Please feel free to in box me if that’s more comfortable..
Looks like I won’t be eligible for any grants or help from Pfizer as I withdrew to much from my 401 last year ....had to!
Thanks in advance....
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Radagast...I had to put my tortoise shell cat down last month. We decided she was our last cat since I struggle to bend down to clean up after her. It was sad but the right decision. I shall have to be content to love from afar. Every time I cough I am reminded of the tootin' se... thankfully my family doesn't remark anymore!
Lynn, so glad to hear from you and that the Xeloda is working for you. Please update us on your water adventures.
Ginny, my medicare is a little different (I think) but I follow these notes with care! Mine is a special supplement offered through my past employer.
Spent a couple of hours at the Dr office yesterday with an xray for this cough. I was coughing so hard it was making me throw up. The doc thinks my virus was never resolved as the symptoms are the same as they were in Oct and I never really stopped coughing, and my lungs look the same. Thankfully it never went into pneumonia. So...I am on a third round of antibiotics even though it probably is a virus, with a different cough medicine. I slept all night (well, only got up once...the first in a long time) and am in my off week so that may help. I did call and put off my Zometa infusion for another month so I can keep up my strength. Onward!
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Lol still laughing at all the 'muffin' jokes! I had a CT scan yesterday with oral contrast. It caused my 'muffins' to be on fire all day!
Laughing is good!
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Ginny, it depends on your Medicare part D insurance company. I have Humana. I assume they are very similar, though. And remember, we haven't seen the expected price hike to 2020 Ibrance yet. At least I haven't. It takes me a co-pay of about $2500 in January to get to catastrophic. Then, all subsequent months' co-pays are $634. (All paid for my the PAN Foundation.) That was last year, 2019. The expected price hikes I've seen talked about don't look any larger than in previous years. About $35-50. They need more $$$, right?
I set up a user account on Humana and get lots of info there about how they set co-pays.
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HAHAHAHAHA!!!!! I LOVE fart jokes!!!! 😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂😂
Keep em coming! They are always welcome IMO :-)
hello to everyone!
I’m still chugging away on Ibrance here I think I’m about to move to cycle 36 or 37? I didn’t keep track and I know I held Ibrance for a week a couple of times.
Ibrance definitely gives me some GI stuff such as amazing gas and sometimes nausea and sometimes diarrhea. I just ate a bowl of chili so we shall see how the stomach handles it 😂 I actually don’t seem to be able to digest highly fibrous meals so well anymore and they just come right out the other end (sorry if TMI!!! But that’s what we are here for, right?!)
I am awaiting a Petscan insurance approval that’s taking a long time and getting my original biopsy tested for the PIK3CA mutation to see if I’m a piqray candidate. Cried my eyes out in therapy today - felt amazing to release the stress of all this and I am SO grateful to have a space and a human that I can cry it out to. I love my therapist!!! She’s so wonderful!!
Talking about “chemobrain” I definitely have it. I completely forgot I had a patient scheduled yesterday morning 😳 they showed up to my office and I was not there. So embarrassing for me! I hold myself and my work ethic to a very high standard around these things. Thankfully they didn’t seem terribly phased.
Anyway - wishing everyone a happy Friday!!
Love,
Philly
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Brilliant to hear from you Joyner
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Great news for me! My doctor called today with the results on my CT scan and Bone scan (he usually doesn't call) and gave me an A+ on the results! I'm so relieved!
Just wanted to give you all the good news! Have a great weekend!
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Great news for Jack5ie and Joyner!!!
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Hi Jaycee , Called today and PAN is open with new grants for this year! You don't have to get to catastrophic to start on it! My first Ibrance for this year arrives this Tues and PAN is picking up the entire copay for 3-6 months and then I can reapply in June. I think that there's a cap on the amount you get for 6 months and I didn't ask what it was but last year they put it through again and I got it covered
My understanding is that Pfizer will then pick me up as their income limits are way more than I expected....per the pharmacy that fills my Ibrance. I live in Fl and have Freedom Health.
The rep at my pharmacy, RXAssured , does all the leg work ! What a gift she is !!Now I Hope I can help others in this area with you ! 😉
Thanks again Jaycee for all your help!
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CONGRATS, Jack51E ! 🎉🎉🎊🎈
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Ginny, The PAN Foundation grants are $5400. The big hit in January takes a nice chunk of it. You can set up an account on the PAN Foundation website and watch your grant for claims and the amount left. I'm surprised that they still had money on Jan. 10. New funds usually run out in a few days. They always have money at the beginning of January. I got a new grant last week. You can sign up for a program they have called FundFinder where you get an email when any foundation has new funds.
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