Ibrance (Palbociclib)
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JoynerL...I think I will hold on to the leftover Ibrance/Letrozole. My onco said I would be on "something" oral when I finish with Taxol. Not sure if it will be Ibrance, though.
Hope
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Diagnosed in May 2016.....16 cycles...it is great to hear others are much far along...0
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Diagnosed with stage IV July 2017 starting round 4 today. Ibrance and Letrozole. So glad to find others with the same diagnoses and treatments. Tolerating well so far except for a few nose bleeds. Has anyone experienced that?
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Hobbe-I'm in cycle 15.
Elmrush-I had no bleeds the first few months but then they stopped. I think it is a side effect noted in the literature. Hope yours will stop soon.
Happy Sunday everyone!
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I am 26 cycles, Ibrance and Letrozole!
Claudia
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I'm in my eleventh month of IF. I did have nose bleeds for the first month or two then they went away. August scan showed improvement/response. Hoping January scan will be even better. Honestly, we're honest on this thread, I am worried about what this one will show. I can't believe I will be one year on this TX. Sometimes it seems like it was five years ago, not one. Long and grueling at times would be an accurate description. Then, the when will I progress creeps in my thoughts. Then, what will my second line of treatment be and how will I feel on it takes center stage in my mind. Then, how long till progression on second line. Then, it seems to get VERY complicated. So, my brain goes there for a while.
On a happier note, I try to focus on the activities that make me happy. For instance, Saturday I got to watch my grandson win first place on all six events at his first gymnastics meet! He's only six, but this kid is good. Evidently, the judges thought so too. On Tuesday, I will get to watch my granddaughter in her first play at her new school. It's called Dear Santa and she has one of the main parts, with singing and speaking parts. I'm so grateful I live close enough to enjoy my grandchildren.
I also had a great weekend with my two siblings. We had our fourth annual birthday celebration together. They drove down from Oklahoma to my house. My brother helped with some much-needed projects around my house. My sister and I finished all the Christmas decor.
Yes, I'm tired, but a good tired.😍🎄💟🎂🎁
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Grannax2, I go there every scan sequence, too. But then it's ok. This last one was tough because I was close to 20 months (19) and the literature I got with my first Ibrance said the trial showed Ibrance got people to 20 months. OK, I'm there, right? Nope. We keep going and you will, too.
Glad you got that happy time with family. That's the best tx.
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Hobbes and all-
I realize that this is grasping at straws and that there are no answers (or none yet), but since I now understand (or think that I understand) that the data currently provided with Ibrance is based on the PALOMA studies (i.e. median length of time to progression), perhaps it is possible that those who would not have met the original criteria to be in the study (most of us) may prove as a group to do even better and have a longer median time to progression than those who qualified to be in the study. That said, it appears that some among us were invthe study and have far exceeded that median data.
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That’s great news! Hoping we all get five years or more!!
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I am in my 19th cycle with Ibrance/Letrozole and doing well. I too have the roller coaster thoughts and emotions like Grannax. I probably would have qualified for the original study as I am ER+/PR+ HER2- with Stage IV ad novim. I am thankful for this treatment and hopeful I will do well on the next protocol whenever/if it ever becomes necessary. My MO will not say NEAD on me as there is slight uptake still in one of my lymph nodes.
Most days I have enough energy to go for a short walk, go out and run (drive) an errand and cook dinner, but that is it. Other days I sit in my recliner most of the day but get up every hour to keep things moving.
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it is theoretically possible that pretreated women could have very good outcomes on hs drug combo, as we have less disease burden when treatment starts. As Ibrance is CDK inhibitor, it has a different mechanism of action than previous treatments. Some women on his treatment who have had several previous treatments have done very well.
In term of worrying about being at 20 months, remember half the women in the Paloma trial were doing well at 20 months, and some are still doing well.
Jo
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I'm having brain fog and I tried to remember who posted these various points but without a lot of scrolling I can't name you so I'll just go ahead anyway.
Thanks for the encouragement about being on Ibrance for 22months (was it?) That's fantastic.
I was lucky enough to be in the category for a trial of Ibrance/Femara currently being held in Australia and yes, whoever posted about it (sorry!) the criteria were very strict. I was lucky enough to be given the last place left so I'm very grateful to you girls who are pioneers in the US because in Australia it's a very new drug and it's so heartening to know how well you're doing.
Yes, about being immunocompromised with Ibrance ~ very much so. I have Grade 3 neutropenia all the time.
No, I have not gained any weight since I've been on Ibrance, for what that's worth, although now that I think about it, I have put back some of the weight I lost due to the cancer before it was diagnosed. I still weigh less than I should though.
Maire....I do remember it was you who mentioned pain whilst off Ibrance. If this is any help, I notice that during the two weeks break that I need between cycles my pain is worse than it is during the three weeks when I'm taking it.
Hugs and love, everyone xxx
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Good morning. Unfortunately new to this group. I passed the 5 year marker on my 1B breast cancer when diagnosed with bone and liver Mets. Found it through gall bladder ultrasound so God was watching over me. After CT scan, liver biopsy, pet and MRI I have just started treatment 3 days ago. Xgeva injection and fluctose 1 x month. Ibrance 100 and continue Letrozolee daily.
Current insurance Aetna is paying 100% ibrance for rounds 1 and 2. I start medicare in January and part D coverage leaves me with $12.500 annual copay. I work and make too much to qualify for Pfizer or other financial assistance. Going to check at oncologists pharmacy about the grants mentioned in this thread.
Lots of back bone pain taking Alleve and Extra strength Tylenol. Heating pad gives some relief. Do not do well on pain meds so have held off.
How long for those of you on this treatment until you have noticed relief from symptoms like bone pain and abdominal swelling from liver Mets???
Thank you all.
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Welcome Schoolmom! Sorry you have to join our group but this is a great place for information and support. I had lots of bone mets and related pain prior to starting this treatment-the pains were gone after the first cycle. Hope you get speedy relief too. Thank you for posting the info on your co-pay. I will be transitioned to Medicare in about 18 months and have been concerned about the co-pays. At the moment I am still under private insurance and pay $10/month or nothing. Let us know what help you find for Medicare patients.
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Thank you Chicgoan.....hoping to get off couch and sleep in bed again
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BCO has a section about financial assistance with drugs.
http://www.breastcancer.org/tips/paying/lower_med_cost
If you scroll down to "other organizations," the three foundations that help with Ibrance are listed.
Patient Access Network, Patient Advocacy Foundation, and CancerCare.org.
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Sorry that last post was so short and non-explanitory. DH had just walked in the door from taking our dog to his neutering procedure. We have both totally fallen in love with this dog in six months and are freaking out about his surgery. I've felt like the days before my own procedures since I got up this morning. Can't wait for it to be over.
Anyway, as far as I know, only those three organizations assist with Ibrance. I've had three grants, the first from PAN, the second from PAF, and now a continuation of the first PAN grant. That is the extent of my experience. Anyone with questions can PM me any time. We've discussed this before but for new people, the income requirements are quite "liberal." Working with the foundations is fairly easy and your MO's office will help. Mine totally did the first one then left me on my own. That was probably because my MO's office people knew I was a computer/numbers person and could do it myself. I am on Medicare and have part D drug insurance through Medicare. schoolmom, since you start Medicare in January you might want to check this out pretty soon. For everyone, you need to remember that the co-pay goes up drastically in January on most drug insurance. Most go to 33% co-pay until you fall through the donut hole (this will happen with the Jan. payment) and then drop back to 5%. Because this drug is so expensive, we never end up IN the donut hole where the co-pay is 100%. I've studied this stuff a lot but everyone's insurance is different. I'll answer any questions I can. These foundations don't always have money for MBC. You have to check their websites often to see what's available.
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Wow thanks for all the reporting. I just finished round 6 with Ibrance Faslodex. My scans in October after 4 rounds showed most of the tumors/lesions shrunk or were gone. I pray that it works for a long time for all of us. I'm still on 125 mg I feel exhausted by week three of each round. I also have gained weight, about ten pounds since June. I am not as active at all and I used to work two jobs and go to the gym three times a week. Now I'm not working at all nor going to the gym. I intend to go back to the gym for yoga or whatever I can safely do once I get soc. sec. disability.
One doctor gave me like a death sentence when he looked at my scary pet scan. He whirled his computer screen around to show my husband and I all the horrible cancer that looked like a horror movie finale. My husband and I could barely stand up after that consultation and I never went back to him.
Does anyone get shortness of breath?
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Jaycee-Thanks for that helpful information. Appreciate your willingness to help us understand the confusing Medicare rules on drugs.
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Yes...I get shortness of breath....my right hip hurts quite a bit. Onc says no mets show up in that area. I am thinking of going to the orthopedic dr for a steroid shot. Not sure if they can do that for the hip. Have had the shot for the knee and it helped. Also, have carpal tunnel in right hand....so trying to figure that one out. Some days feel like I'm falling apart.0
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Leapfrog... I know about brain fog.. can't remember or find my Christmas stuff!
Grannax... I know exactly what you mean.. we all have those dark days.. thanks for sharing so honestly...I also live close to one set of grandbabies and enjoy, appreciate and am grateful for all of it. Fun times with your sisters.
Schoolmom.. welcome to the thread.. we're here to support you
Forgot who asked but yes I do get shortness of breath.. but my mets are to the lungs.
I was diagnosed with mets to lungs in 2008, aromasin held it back until we found it again in May 2017 same place lungs, starting my 3rd cycle of Ibrance/Faslodex
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All-clear PET/CT scan results at my appt today!! Got cleared to start cycle 28, although my neutrophils are still barely hanging on, so I'll add a probiotic and see if it makes any difference (thanks RPoole!)- I'd say how great it feels, but you guys already know. My MO is heading to San Antonio tomorrow, and I asked her to check if anyone there knows if there are still patients taking Ibrance-Femara from the clinical trials, how many, etc...
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Fabulous news, Cure-ious!! Congratulations!
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It is encouraging that so many ladies are over 20 months stable on Ibrance. I just started my first cycle 3 weeks ago and was forced to rest a week for neutrophil to bounce back. Today the blood test show it went to 1.3, so I can complete the very first cycle. No obvious SE.
Now comes the other headache! I got the first free bottle from the nurse, she told me the specialty pharmacy will handle the rest refill. I went to the pharmacy, my Medicare copay will cost me $3,000 a month, and I am not qualified for foundation assistance because my income. I got the second bottle free of copay but the price tag is $15,392.12!! Ask pharmacy to help me lessen the burden in anyway they can. Need to find a way to pay for future meds by mid January!
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Cure-ious- great news! Congratulations!
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Cling, I also am just starting and switch to Medicare in January. I have been trying to decide on part D....the united agent explained to me 1300 initial cost and then 758 each round. Donut whole does not apply and was given estimate of 12500 for year.
Chicagoan posted on this page about grants...chk with Dr office.
I too work and do not qualify for Pfizer financial assistance.
I have an Aflac cancer policy that may help but not sure.
Good luck
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Cure-ious, this is indeed great news. I am so happy for you!
Cling, I am starting Medicare in February. My DH says the Kaiser Part D special Group Plan I can access is the same as we already have, but I am still working on the details. I can stay on his insurance until he retires next Spring if needed, but I am nervous about it. I do not want to eat up our savings for this!
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I was on IF for 16 months before progression. I had already had letrozole first, then aromasin.
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Cure-ious, what thrilling news! I'm so pleased for you!! What a big relief.
Schoolmom...I'm sorry you've found yourself in this thread but it's a great group and we all support and help each other through good news and not so good news. A lot of the girls have an enormous amount of knowledge so any questions you have.......
I've been on Ibrancce/Femara for almost a year. I've just started my twelfth cycle and I have extensive bone mets. My MO says I'm carrying a huge load of cancer. The reason I'm saying this is not for sympathy but for background because I have to tell you that in the eleven cycles that we've monitored, I have stable disease, which is great! But there has been no improvement yet. Neither has there been relief from the pain in my back so I'm still taking narcotic drugs, unfortunately. I'm optimistic that eventually there will be a breakthrough and I like to think of the cancer cells just showing bravado but with no substance to them and one day they'll realise their time is up and they'll just collapse like deflated balloons and my next scan will reveal it. That's my way of looking at it!
I'm fortunate that I was given the last place on a trial being held by Pfizer in Australia, where I live, in an attempt by Pfizer to persuade the Australian government to put Ibrance on the PBS, which is our subsidised drug schedule. So far, two meetings have been held and at both meetings it has been voted down so it's at least $7,000 for women who are not on a trial.
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Thank you Cure- ios for the information about over the counter NAC. I am going to check an order it.
For those who doesn't relay only on the official approved drugs, I am starting Astragalus and Echhinacea supplements, which are supposed to help rebuild the WBC.
Prayers for all of us
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