Ibrance (Palbociclib)
Comments
-
Welcome park. Step back from the ledge. Markers rise like that on this protocol all time. Fill out your diagnostic and treatment history to give us more context for your questions.
Susan - The move back to letrozol by your onc is, indeed, a ballsy one. I like this onc. Very interested in how you do.
Lalady - Enjoy the skinny jeans and the film festival. That's not very much fluid Expecting all good news from here on out. I am in awe of your energy. I have it sometimes, but I can't count on it enough to hold a job like yours. Your busy life leaves you no time to think about this nonsense. Very healthy for you and inspiring for us.
>Z<
0 -
Zarovka, I admire YOUR energy! It's all I can do to work 8 hours and collapse on the couch when I get home. I have started a goal this year of 10,00 steps a day. Pretty easy on the days I work, I'm a nurse so on my feet a lot.
0 -
Lynn - I have the deepest admiration for those who work. I have energy ... when I have it. But there are a lot of times when the balloon deflates and I collapse in a heap.
Send me a PM to join our fitbit group if you like. Sounds like you are out-walking us all.
>Z<
0 -
Ladies, I admire all of you here, those holding jobs while fighting this battle and those of you who are so smart and do so much research on other drugs and clinical trials. I'm sure there are many women out there who are reading along as I am and learning so much. I applaud you all, you are my heroes.
I have a question about RBC, fatigue and dizziness. My RBC's have been steadily dropping since I started the Ibrance and letrozole, just finished rd.#13 of 125mg. The fatigue is somewhat better now than it was early on especially if I can get some exercise into my day. I still deal with constant dizziness or just lightheadedness. Have those of you who have dropped to the lower doses i.e. 100 or 75 mg noticed your RBC, fatigue or dizziness is better?
I also have a small warning for those of you who are looking for financial help with the expensive copays of Ibrance. Last year, I was given a charitable grant that covered my copays, all arranged by my specialty pharmacy without my even knowing such help was available. This year, that same foundation had no more money and neither did others whose names I was given. I called the speciality pharmacy to see what I needed to do and was told I would probably qualify for some help and they would get back to me. Within an hour of my call I was contacted by a "benefits care" company and told they could help me. Thinking they had been given my name by the pharmacy I talked to them and foolishly agreed to their service and paying a member fee and a monthly service fee to be taken from my checking account and gave them too much private information. Little did I know, my pharmacy had already contacted Pfizer on my behalf and started the process for free drugs. I considered myself fairly savvy in protecting my privacy but I was caught in a very vulnerable moment and wasn't careful enough. In the meantime, they have taken money from my checking account which I have just paid to have a stop order posted. We also had an attorney write a letter canceling the service and asking for a refund which is of course costing more money. I'm praying we don't have any problems goIng forward but I'm not sure. The company has lots of complaints and also some praise on the BBB website. It was an expensive lesson learned and I hope I can warn others to be even more careful with your information.
I still don't know how they got my name and knew I was looking for help. My pharmacy says they do not give out that information. The "benefits" company says they found it on the internet so my question is which website were they able to obtain that information from.. we just can't be too careful ladies. I have wasted a lot of time trying to stop this mess and get to the bottom of this mystery, not to mention the anxiety this has caused which is certainly not good for any of us.
Just be careful everyone. I'm going to try and put this out of my mind and get on with my life of fighting cancer.
Faith ( in the future)
0 -
Faith - It's hard to believe there are scumbags like that out there. I am sorry you have to deal with it. I too am contemplating dropping my Ibrance dose to reduce the fatigue. Interested in the response you get. The main thing holding me back is the suspicion that the problem is hormone suppression not RBC or WBC counts.
>Z<
0 -
Z, thanks, yes, it is hard to believe that these scumbags are out there taking advantage of us at a vulnerable time in our lives. How are your RBC's, have you noticed them slowly dropping? My WBC is okay as are the neutrophils. I see the MO on Tuesday and willget his input but from past experience, he doesn't want to drop the dosage. We'll see.
Faith
0 -
I'd just like to point out to everyone who has been discussing the ER+PR-HER2- phenotype, and what that might mean for treatment, that SusanR had that diagnosis, although starting with low tumor burden of just one bone met (unlike so many of us with extensive bone mets) but nevertheless was stable for 3 years on letrozole alone, plus then 5 more years on faslodex alone, and now going to onto letrozole+ Ibrance combo, all of it since stage IV, if I read that correctly?. So, although the PR- is (or can be) more aggressive and less hormone-dependent, clearly it can respond very well to AIs, you give us hope!
0 -
Faith - My RBC's drop to just below normal in the third week on ibrance, but it hasn't gotten worse over time.
>Z<
0 -
I just took the last pill of my 1st cycle. I am hoping that the break gives me some relief from my mouth sores. I have about 5 places I my mouth. Has anyone had this happen in the beginning but get better as you get use to the tx? I have done coconut oil, Himalayan salt water, biotene, magic mouthwash and nothing is making them go away. They didn't start until last Monday. I don't know if it is from ibrance or gedatolisib or both of them combined.
0 -
Apg - the mouth sores are a common SE from ibrance. They may get better with time, they have for me ... starting 13th cycle. i would try swishing your mouth with a high quality liquid probiotic or homemade yogurt. but most likely, they will become a lot less frequent.
>Z<
0 -
Apg, I'm so sorry. Those mouth sores can be miserable. I had them and started eating Stonyfield Greek Yogurt which has live cultures and is from grass-fed cows. The relief was almost immediate and I've had close to zero problems since. I'm on 100mg of IBrance as my oncologist starts everyone on this dose. (Round #5 for me.) I pray that you get better soon!
0 -
Faith - Thanks for passing your story along. I hope you're able to get it all straightened out soon.
0 -
Hello all! I'm new here - not new to MBC! I've been fighting since 10/2013 - since age 37. Thank you for sharing your experiences, encouragement and tips. You all seem like a great group! Zarokva - you are really inspiring! I love the knowledge you share and you seem really upbeat. I'd love to hear more! Especially if you have any tips about natural therapies. I have a lot to catch up on reading all of the previous posts. I just started ibrance, faslodex and Gedatolisib on 1/9/17. Had a tough first round (mouth sores and whole body rash). Receiving a a lowered dose (100mg) of ibrance and the SE are each much better. Coming off of prednisone - first time on that. Not a big fan of steroids or any pills for that matter. I've enjoyed being on tamoxifen and anastrozole with no SE, so all of these new drugs feel like I'm back when I was first diagnosed. I eat a plant based, whole food vegan diet - cheat day today though. My concern about the trial is that the Gedatolisib is administerd in dextrose and not saline. It also causes insulin and glucose levels to be higher. I believe that cancer feeds on sugar. Does anyone think this is a cause of concern? When it comes to meds, MOs never see anything as an issue because well - you have MBC so you just have to take them.
Looking forward to learning more from all of you!0 -
Hi everyone! I just started Ibrance this week after radiation to mets on my T11 and right illiac bone. So far I'm doing alright. A little fatigue today. But my throat feels weird, dry and slightly swollen. I didn't realize how long the Ibrance course takes. Could I really be taking it for a life time? Anyway, the information has been very helpful. Thank you.
0 -
Thanks for all the tips! I will get some yogurt. I haven't been eating dairy since the mets dx 11/22 but I am willing to if it helps. Other than the mouth sores I'm feeling really good. Mostcapable I worry about the dextrose too. I'm also a little bummed because I got my port just for the gedatolisib and then they can't use it. My rash has went away now so that is good. It wasn't bad though to begin with. Hope you continue to do well with se!!! I will start tomorrow with my first day off of ibrance!! I'm hoping this will help my mouth to feel better too. My neutrofils were low last Monday so not sure if they will be too low to get tx or not though. Good luck tomorrow
0 -
Mostcapable, Thanks for chiming in, everyone is curious about your trial~ will gedatolisib be the next drug to get FDA approval and replace Afinitor for MBC? About the sugar, I have read that breast cancer, being more estrogen-driven for growth, is not as sugar-sensitive as some other cancers, like pancreatic. And clearly there is this side effect of high sugar levels from this class of drugs, but the statistics they are generating of course take into account what the drug is delivered in, so if there is a benefit, it will be above and beyond any effect from the solvent they used
0 -
Pink- I have the sore throat too. It has came and gone. I just took last ibrance for my first cycle today. I'm hoping it isn't something that is happening all the time. I hope your get better too. I'm not really having a lot of fatigue or pain yet so hope that doesn't start either. Good luck. I've learned so much from all these ladies on here. They are all great
0 -
Welcome Most Capable. In general, you don't want to be pounding down sugar, but the truth is that all carbs are broken down into sugar eventually. You can do a high protein, low carb diet and try to starve the cancer of sugar and that may work, but I am not part of that small committed group. IMO, the problem with any sugar solution, be it an IV or gatorade, is that it is nutrition free calories. You need to get your fiber, your protein, you vitamins, your healthy bacteria and your joy from what, in the end, is a fairly limited amount of calories each day. I totally agree that MO's can be quite obtuse regarding overall wellness issues, but the opportunity to give the Gedatolisib a try is more important than worrying about what they put in the IV.
Thank you for joining us. We now have two people on that trial and we are very interested in how it goes. Cancer being a tricky beast, therapies that corner cancer with mulitple modes of action have been the most effective.
Welcome Pink - Yes, indeed, the theory is that the most fortunate among us will be on Ibrance for years and years. There are people who participated in the Ibrance clinical trial who are now 6 years +. I am not thrilled about this, but less thrilled with the alternative. Lots of weird little side effects but over time you figure out how to deal.
>Z<
0 -
Pink, at first I was bummed to think I might be on IBrance forever but I have to remember that each time I've been diagnosed (since 1994), new treatments have been approved that weren't available before. Also, I have friends who are many years out from diagnosis with MBC who are not on any treatment currently and they remain NED. Subscribe to Oncology Business Review online and you will be encouraged by all the innovative therapies on the horizon. I think you and I and the other survivors here are on the leading edge of a true cure! Let's write that on our mirrors!!
0 -
Patg- I feel like we are also! I pray that anyway!
Z-my mouth is feeling much better this morning. I'm headed now to get my IV trial tx. I seem to always get back to my mouth feeling better then I get this and it starts again. Maybe it won't since my ibrance break. Hope my neutrophils will be good enough to get it.
I hope everyone has a great week. I think of all you wonderful women each day!
0 -
Faith- if your RBC, Hemoglobin and Hematocrit are still within your clinics' normal range, I would not be concerned. Certainly very low values for any of these(anemia) can contribute to dizziness and fatigue. IMO, the Ibrance and estrogen receptor interfering drugs are the culprits. My RBC count is lower than normal now, but stable.
most capable- unless you are a diabetic, your body has all the homeostatic mechanisms in place to regulate your blood sugar. The system should handle fluctuations. It is sustained elevations of blood sugar that cause damage. I am not familiar with glucose" feeding" cancer cells, but since all cells require the energy derived from sugars, it would make sense that malignant cells might use more. If it were me, I would take the Dextrose in the IV off my worry list! Love and hugs, MJH
0 -
curious- i tried to find a link but I can't. The trial info I have on my consent is CCF IRB# 16-1350 from Cleveland Clinic. Project title is Case 6Y16 Feasibility of Tumor Genomic Sequencing Using the Tempus Platform
0 -
Pat, thanks it's good to know that someone else was feeling down about the thought of taking Ibrance for so long. I feel bratty for complaining about having to take it for so long, like I should feel grateful for the opportunity to even get it (took a long time to get approval because I'm technically not postmenopausal....Lupron took care of that) but I may have to put off getting married. I currently have insurance through the state not completely MA but it is subsidized. With the current changes to the ACA, I may never be eligible for insurance again. With the cost of Ibrance at $10,000 a month, I can't see an insurance company being to eager to sign me up. $240,000 for two years of just Ibrance, that doesn't include CTs, MRIs, etc.
I'm curious, how many people receive disability? MBC qualifies as a disability. Seems strange since I don't feel disabled. Everyone is telling me to get a handicapped sticker for my car because I have difficulty walking due to the met on my hip.
Sorry, I'm still new to ALL of this. I was diagnosed on my 45th birthday 3 months ago. I have barely had time to absorb all of it.
Thanks for letting me vent.
T
0 -
Has anyone had hair thinning, lousy nails, and really dry red itchy skin spots on the face, as side effects? I feel so lucky because my fatigue, while present, isn't debilitating. I've been taking the Ibrance/Letrozole combo for over 6 months and these are the first weird side effects, other than the aforementioned fatigue and a few mouth sores. My white counts are even staying in the low end of normal. I'm on the 125mg dose.
My first PET scan after being on the meds was in December and my onc has declared I'm in partial remission! I'm bummed that all of a sudden, my hair and nails are not growing and my skin is doing something weird.
0 -
Talpha,
Congratulations on the great response to our magic medicine! There was a time when oncologists wouldn't say the word "remission" related to MBC. And now you're almost there!
About that hair: After Taxol/Carboplatin in 2012, only baby bird hair with patches missing grew back on my head and barely any eyebrows. Now it looks like IBrance will take my eyelashes as they are diminished more with each cycle. But my cancer has also diminished so I'm thankful!
About red itchy spots: I have very mild ones from my ankles to halfway up my calves. Nothing terrible, just odd feeling. It sounds like you're doing great to be on the 125 dose.( I'm only at 100 mg.) I wonder if your oncologist might reduce you to 100 (or even 75) at some point and you might be side effect free for the rest of your very long life! I hope so!
Pink,
Three months is hardly enough time to get your mind wrapped around this. Bless your heart. I was first diagnosed at 44 years old and I remember that feeling of being too young for this. I thought my life would end soon and I even picked out funeral songs. But guess what...I'm 67 years old and, in spite of 4 go-rounds with this sucker, I've had a great and pretty healthy life. I'm still here and I look forward to chatting with you when you're 67 and I'm flirting with 90!!
About paying for IBrance: There is always a way for your oncologist to get the drug paid for > > Drug reps have samples, foundations provide funds and Pfizer has a program. In the meantime, we can all contact our legislators and demand that the ACA remain in place until whatever they propose is ready to roll.
0 -
Hi Talpha - I lost a lot of hair due to Ibrance in my second cycle (I am now on cycle 14). My tip for newbies losing hair is to consider a hair halo. http://halocouture.com/ I use the fall and another member uses a cute layered bob. This is real hair and you will love it better than a wig! No one at my office suspects, and yes, I am still working.
Eyebrows can be penciled in or even tatooed. I pencil mine with Anastasia browwiz from Sephora. http://www.anastasiabeverlyhills.com/brows/ My eyelashes are nearly gone, so for formal events I use false ones, otherwise I use Kat Von D eyeliner on and below my upper eyelid. It gives the illusion of lashes. Hope this helps(()) Claire
0 -
Thanks so much for the kind words and advice. Back in 2013, I had six rounds of intense chemo. I was completely bald. My hair came back, but is really thin making me look like I have bald spots, in the front and crown. I also have not had my eyebrows grow back. My hair was always super fine, but now it's just awful.
I'm only 41, I was 37 when first diagnosed. I'm an identical twin, which means I get to see the old me all the time. It's rather depressing. My sister is my best friend and I hope she never has to go though this herself.
Today was one of my fatigued days, so I'm cranky I guess
0 -
thanks for welcoming me ladies! I went for my third round of Gedatolisib today (would have been fourth but the SE stopped me one week). I asked about the dextrose and you all are correct! Plus, it's only like 5-7 grams that I'm getting. That's not bad at all. Thanks for talking me through that fear. I've struggled with the trial because I had it easy on tamoxifen and anastrozole - really wanted to stay on anastrozole - no SE with that. I'm very thankful about the trial. There wasn't a spot for me and then it opened up - like it was meant to be. Plus, I have only one somatic mutation and it's the PI3K pathway. This round went well, chomped on ice and didn't experience any tingling or numbness in my mouth - it also helped prevent mouth sores last time. Feeling good this round and happy to be on my palbo holiday!
Z - I'm following the China Study diet (forkes over knives). I agree that eating the most nutrient dense foods is the way to go.
Misty - hope today went well! We will have to meet sometime during the trial. I didn't get any bloodwork today and I found out I get to go back to my Oncologist after next week. I miss her! Thanks for sharing your other trial.
MJH - I agree - focus on the blessing that is me getting to be on this trial.
Pink - I pray that you find peace - it's so difficult in the beginning. Yes, MBC is a qualified disability under the ADA. I can't identify with that either. I live my life everyday like I don't have it! Sign up for the ibrance drug payment card which limits your copay to a smaller amount. You shouldn't have to worry about finances. Easier said than done, right? I believe things will work out with health care.
Talpha and Pat - you are inspirations! Love hearing stories like yours!
0 -
Faith, yes, dropping the dose greatly improved my fatigue. Welcome, Mostcapable and Pinkbungado. Talpha1, you have a right to complain. I see you had an ooph this year, so menopause could be partly to blame for the thinning hair and dry skin.
0 -
For those who have been following my story -- My tumor markers did not lie. Neither did my intuition or my onc's. (I have thought for quite a while that something is brewing. She had advised a change before this scan result came in.) Recent scan (finally) showed larger lesions and higher SUV in liver. No question that a change is needed. My onc kindly pointed out that getting almost two years out of Ibrance + letrozole bodes well, and that if I can get two years out of each treatment, that's a long time, and then other treatments should come along. Had a second opinion because it is such an important decision, and got valuable input even though the onc would not choose for me. I will discuss more with my onc soon. My current thinking is to go with Faslodex and pair it with afinitor, or go on a trial that pairs Faslodex with another PI3K/mTOR drug. More later as I am too tired to write out all the details.
0
