Ibrance (Palbociclib)
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Z, those scans certainly can and do show where you have had shots! It's happened to me for years! Dr. Larkin says you do not have cancer in your butt lol, 100% guaranteed
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Z, here's to Fat-Bottom Girls that make the rockin' world go 'round! Your PET results give us all reason to celebrate today! Congratulations!
Dianarose, yay on the better numbers!
About being still before a PET: After having friends (and my daughter) get scan results that showed uptake which turned out to be "nothing", I did a little research and found an article saying most physical activity should be avoided for 24 hours before a PET. I wish I'd kept it so I could know how reliable the info was. My technician has me lie down in a recliner in a dark room for an hour after the first injection.....which I need after the ordeal of finding a vein since they won't use my port!
About my Ibrance cost: My onc's nurse applied for me to get it through a foundation from October through December, 2016. It came via FedEx from a specialty pharmacy (Axium) who had a nurse call to interview me at the end of each cycle. Upon applying for 2017, we were informed that the funds were exhausted. My angel of a nurse applied directly to Pfizer and they approved it for a full year through December. There is no charge directly to me and, upon hearing from my oncologist each month, they send a bottle via FedEx. I have Medicare, Mutual of Omaha supplementary insurance and United Healthcare's drug plan. I imagine my drug plan is being billed but I don't get any notification from them.
Joyner, hopefully, the FDG will be greatly diminished on your first scan even if the lesions don't look smaller. For those of you with bone mets, do you also see an orthopedic oncologist? I'm not one who likes to go to more and more doctors but I've decided to see this one every 6 months. He does regular x-rays and I like hearing him say these lesions/tumors (he uses the words interchangeably) look like they're dying on the inside!
A question for those of you who have discomfort from bone lesions: My largest lesion is on the right femur and it's what felt weird and sent me to get checked in the first place. It feels like a deep bruise and causes me to limp a bit when I first stand up. Is this something radiation would "fix" or should I just be thankful and let it go?
Have a happy week-end everyone! God bless all your parts!
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From the lab at Vanderbilt-Ingram:
https://news.vicc.org/2017/04/study-examines-new-b...
Looking forward to adding that 3rd pill!
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I am on my second cycle. MO hasn't mentioned scans. I am not complaining as I hate them but curious when I should expect them
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Dianarose,
I think it's customary to scan after 3 rounds.
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Pat, Thank you for the link.......and in keeping with research.......
I've been corresponding with one of the scientists/researchers, Dr. Hartwell who along with Dr. Nurse and Dr. Hunt were involved with palbociclib creation in the lab in 2001. He and 2 other scientists received the Nobel Prize for their efforts in 2001. I thanked him for all the years and years (since 1970's ) of his research that led up to 2015, when Ibrance got accelerated approval from the FDA. It wasn't until 1995 that CDK4/6 was suspected in cancer growth.
He was so pleased to hear from me and was very interested to hear what we all have been experiencing and how grateful we are to have a drug for breast metastasis. Thought you all would like to hear that.
Good weekend to all!!
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Lindalou, I'm so glad you got the chance to thank Dr. Hartwell for all of us! I remember reading his story and being amazed that researchers keep at it for so many years. When you correspond with him again, tell him there's a woman in Tennessee praying for him...a woman who is one of 3 BC-surviving sisters with a BC-surviving daughter who are also praying for him....and thanking him.
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Lindalou, thanks for making me remember this today.
For everyone, here's the team we can celebrate for our good fortune:
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Dianarose~ I haven't been scanned since November and that will makes six months for me. I scan next week. Some oncs do three months if you have more symptoms especially , but also because different oncs choose different ways to follow their patients. Honestly, since I hate the word, everytime I hear it,it triggers post traumatic stress for me. I don't even really want to scan now. Big chicken checking in here ! Good weekend to all! ~M~
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Pat, I will forward your thanks to him for sure. I love the article about their collective Nobel Prize. My BIL was FDA Commissioner at the time and fondly remembers them. We are indeed for ever indebted to them and their research.
Linda
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Micmel, there are no chickens here! You are brave and I expect good things from your scans next week. I'll be following you into the big machine on the thirtieth. I have a friend, Donna Wolf, who is an amazing fiddler, bringing joy and dancing every time she picks up her bow. I've taken to thinking of the Ibrance pills as tiny fiddlers who enter my body and get those cancer cells to dancing so fast they use up all their energy and can't possibly grow. I'm going to picture yours doing the same this week.
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micmel- I hate scans too. I have to take Xanax on the way and when I get there. Then you have the stress of waiting and results 😖. I love living in denial. I am getting good at it. Just want to feel normal for awhile.
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Pat~ thank you so much for those words! God knows we've all been there! 💜 ~M~
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I am in awe of scientists, and their dedication and persistence. Thanks to all scientists for moving us forward and discovering treatments for us.
Scans. those pesky events - and then the wait for results! I really hate the "Smoothie" as they market it! I've never heard we had to keep still. The last time I had a scan, the whole room got into conversation - and there was a lot of laughter and movement. One chap downed his bottles in one! If I did that mine would come back just as quick. And it was special because of an elderly couple - as the lady got some good results over the phone. We all cheered. Certainly helped to lighted the mood. My next scan is in a months time - I go through the torture every 3 months.
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So far I have data from faith480, JoinerL, and Micmel. If you can find out Faith how much the actual cost of the Ibrance you take that would be helpful. I know your copay is 0, but somebody is paying. I'm still waiting on whoever is going to pay my copay if I stay on Ibrance. So far I've gotten a bottle from MO's office marked sample.
My bone mets have all been sclerotic since first scan, it was the lungs causing the problem.
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Dianarose~ my onc told me he didnt have to see me every month anymore and that made me want to jump for joy. Then it was blood work once a month,instead of every two weeks since it was so steady since I started ibrance. He was pleased everytime I saw him and insisted the ibrance was working because My tumor markers have plummeted and was very pleased, and then he said "you haven't scanned in what would be six months on this date". Let's schedule the scan, even though everything he said was sooo good. All I heard was that four letter word "scan" and it was as if nothing else he said registered. I absolutely hate that. Why do I always freak out when that work is mentioned.? Last month my DS found a lump on his jawline (he is 20). And I almost lost my mind. It was like ok god. I will deal with the cancer. Not my babies. Just No! He had an ultrasound and Iuckily it ended up being a cyst and it collapsed shortly after. But talk about even worse terror worrying that a child. My child, one our our children (us here at BCO) is just too much to bare and have happen. It's like a horrible ride I got on, that I can't wait to get off, but everytime I come around to the operator he never seems to let me off, and it keeps going and going. It's unexplainable to anyone who hasn't heard those words, spoken to them ,cancer,chemo,radiation,oncologist, surgeries (many), results, progression,blood counts,neuropathy and the list goes on. I think normal would be the most wonderful thing I could imagine not only hearing the word normal, but feeling it! So Dianarose, I am right there with you ! Gentle hugs ~M~
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Micmel- my daughter called this morning crying. They are renting a house in California because her husband is a marine. The landlord just gave them a month to get out because she is moving in the house. My daughter and grand whose 3 both are very ill with Lyme disease. It's horrible to see your kids so sick. Just want to hug her but can't. Breaking my heart. So glad your son is ok
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This really does seem to be the time when we are all having scans, weird coincidence? Dianarose, we would all like to just feel normal again but what does that feel like? Even when things are going well, every twinge makes us worry. I don't know how to let that go and God forbid, something turns up in one of our children, the anxiety is awful.
Cive, as for who is paying for my Ibrance, it's coming direct from Pfizer so I'm assuming they are getting a tax write off. I don't get any monthly summary from my drug plan that mentions Ibrance like I did last year when a charitable foundation was paying for it. If I recall, the summary said the full cost of Ibrance was about $11,000.00 per month. Like others I have seen here, my copay would have been about $3000.00 the first month until I fell into the donut hole and then it would have been about $525.00 a month.
I hope others will chime in with their costs as it might be helpful to the newbies out there.
Micmel, my onc also told me he didn't have to see me every month either, just monthly blood work and see him every two months. Sounds really good to me until we hear the word "scan"! Like Z, while my scans have been pretty good, there's always a "but". Last time they found an infection in my lung I wasn't even aware of and this time it's the rectum lighting up a bit. I just want to hear NED like all of us here.
Praying for everyone here, especially those having scans soon.
Enjoy the weekend, it looks like we are in for a cold, rainy one here in Illinois. Time to be a hermit!
Faith, (in the future)
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Hello Everyone - Well as of yesterday, after 17 cycles, I have taken my last Ibrance pill. That pesky spot on my liver is now considered a metastasis and I will be starting a new treatment in 2 weeks. As of today I have stopped taking Ibrance and Letrozole to clear my system for the next treatment. I will be having a biopsy on the lesion on my liver (it is only 13 mm but it now is "large" enough to biopsy) within the next 2 weeks. Previous scans showed it to be 5mm and 7mm and lesions/spots under 10mm in size are considered indeterminate and not large enough for biopsy. Whether that means it is not physically possible to biopsy or just too difficult to biopsy with certainty I'm not 100% clear on. But since it nearly doubled in size between scans and passed the 10mm threshold I can now have it biopsied. They also drew blood for a liquid biopsy (Guardant360) where genetic information for the tumor DNA can be analyzed through the blood. I'm keeping in mind that there is a possibility that the biopsies come back negative but my gut tells me they won't. I will keep you posted.
So now for my new treatment. I could have continued on the path of the available standards like Fulvestrant and Ribociclib, or Xeloda, but I have opted to participate in a clinical trial for a combination of an approved drug, Ribociclib, and LSZ102 which has not been approved by the FDA yet. LSZ102 blocks and destroys the estrogen receptors. It is known as a SERD (selective estrogen receptor degrader). I was also offered a clinical trial for a drug targeting my specific gene mutation (AKT1 E17K) but that trial isn't as advanced and the way that drug works could involve the brain. So that scared me off of that one.
To my knowledge this trial doesn't have a name. It is a Phase I/Ib open label study for the drugs identified above in patients with advanced or metastatic ER+ breast cancer who have progressed after endocrine therapy. In this study they are looking for the highest dose that can be taken safely without severe or unmanageable side effects. Participants will be given different doses. The dose I get will be dependent on how many people have been enrolled in the study before me and how well they have tolerated their doses. There is a lot involved when participating in clinical trials. More blood tests, more frequent scans, more dr and hospital visits. Since my nature is to investigate and troubleshoot problems those kinds of things don't bother me.
So I think many of you are wondering why I am choosing to participate in a clinical trial rather than going to the next "standard of care" option. Well one reason is that I've read enough on this discussion board to see that "standard of care" options are a crap shoot too. Everyone is so different with how their cancer affects them and everyone responds so differently to the same treatments. It breaks my heart to see so many wonderful women suffering from cancer and/or the side effects of the treatment. Often it seems that the side effects from the treatments are worse than the disease or in my case the side effects were pretty tolerable yet the cancer progressed anyway. My bones remained stable which is great but the cancer managed to advance to my liver and I can't help but want to scream WHY??? Or more appropriately HOW??? Well I can't expect answers and better treatments that last longer or ultimately even cures if people aren't willing to be studied. I have been feeling so helpless since my diagnosis. I've had this nagging feeling that I should be doing something to help "the cause". I feel like I'm just sitting here taking my pills, dealing with the side effects, hoping for the best and living my life in 4 month increments between scans. I'm not a fund raiser type and I'm always wary of where the money actually goes. So I find myself in a position now where I can actually do something. Whether I went with the standard of care or the trial I would still be facing new side effects and uncertain results. Sure the trial has far more uncertainty and of course risks, but it sounds very promising. And since I will be monitored so closely I will find out sooner rather than later if it is not going to work for me. I can withdraw from the trial any time for any reason. The oncologist for this trial is wonderful. I love how he explains everything and draws pictures. Yes I am scared but I am also excited.
I've gone on far too long here but thanks for reading.
I will continue to read this thread. You all mean so much to me. You've been an incredible source of support, love, laughs, and information. Yes there have been tears as well but that comes from the love.
I'm not going to say goodbye.
Cathy
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Diana~ a perfect example of the freaking helplessness we are forced to feel! I am sorry honey, thirty days is nothing and throw in an illness BOOM makes me Livid. I will add them to my prayers. Lymes disease is rough!! I'm sorry Diana, like I said all BCO children are off limits. Hear me loudly lord!
Faith~ I know how you feel. I swear everything is a lump, I sometimes am even afraid to search because I'm always certain I will find something if I look hard enough. So it's been six months six I've scanned. To me it can either be good or bad. At least if it was three months I would maybe feel like I had some sort of idea how things were going. Now I have no clue. I feel good and have been jogging and am pretty darn active,considering that I felt like I was hit by a moving bus last year and can't take anymore bad news. But is going six months out good either ? Something could surely form in that time frame. This is what I do to myself all the time back and forth. Well my onc said this. And then he said that, but my mind creeps in and says but last time he said this and look what happened. SO MAD!! Ugh scanxiety PTSD,same thing to me. Enough already for us all!
Animalcrackers~like I said we are all in this shit soup together. I hate that you have to fear anything except naturally growing old, is that too much for this group to ask? Like seriously wow! I have never seen such strong wonderfully kind women in one place than I have here, I feel If i had just one wish, It would be the gift of healing, just because all the money in the world does nothing against this beast. That would be my one wish. And for you Cathy, my wish is now, that this trial kicks the Crap out of that darn liver met! I still believe, Cancer cannot out run love, support, and genuinely caring for a group like we all care for one another! I am always keeping everyone close in prayer. I will never give up, praying and hoping that your trial is the one, the answer. Thank you Cathy for trying this trial. On behalf of someone who also has bone mets, had a liver met, and also ER positive cancer. You're brave and beautiful!💜 Big strong hugs! ~M~
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Cathy,
Your decision to enter the trial makes a lot of sense to me. Thanks for being a pioneer for this new research-let's hope it is one more step in ending cancer.
Best wishes for success with this new combination. Please keep us posted.
Jane
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Cathy you are in our prayers. Please keep us informed and thank you for doing this trial. Hopefully the se will be minor
Cancer cells want to live too. This drug blocks pathways, so the cells that survive have changed. I was told 22 months was great on ibrance, then something new might be in the works....
On the drug cost side, I pay $41.17/month. I have medicare with PERScare as supplimental and Optum as drug coverage. Optum paid $9744.28 and medicare coverage Gap discount paid $1528.42. the gap discount was arranged thru the onc office
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Got up in the night to pee and there was nothing in the bag from the right kidney. When I got up still nothing. Figured I would spend my day in the ER. DH took off the dressing the visiting nurse just changed and there were two big kinks in the tubing 😖. Sometimes I get so mad that there are so many mistakes in the medical field
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Hi all, much like Animal crackers I just finished 18 rounds of Ibrance + faslodex, and sadly it will be my last. Scan showed bone progression on T8 and its rib along with uptake in the liver (not a met yet) but ugh. Since I have been on a SERD (faslodex) already, I am moving to an mTOR inhibitor called Afinitor + letrozale (following the BOLERO 4 trials). Dr Glaspy at UCLA said he has ladies respond to this, so I will adjust and swallow this daily fireball pill with a dose of honey as it's prime SE is mouth sores and you must cut the blister pack (aptly named) open with scissors to avoid burning your fingers. lol Imagine my poor throat and mouth, but take that cancer! SP is already on Afinitor + faslodex, so I am not alone, plus I have Z and Cheryl in my pocket urging me on. I have my Baltic cruise planned for the last week of June, onc said ok to go and take a week off Afinitor - ditto for my Paris/Normandy cruise the end of July. You can see what a planner I am, as the median PFS was 20 mos or so, and that is when my European cruises were planned. So much for cancer being logical. On the other hand I am going to travel and enjoy our beautiful world and upgraded to biz class with miles so it's easier on me, plus taking my sister. I went to Europe twice last year, so will do it again now. And I will post a pic to remind you all to enjoy this cancerland journey as best we can. I am still working at a job that brings me joy and relevance, plus covers the bills.
Lastly after my black persian cat of 17 years died in March, I adopted Mr. Tiny 2 weeks ago who is busy tearing up the bedroom with kitten madness.
Wishing you all a long time on Ibrance until the next big advancement.
(()) Claire
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lalady- that is the cutest kitten ever
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Dianarose, it probably won't make any difference, but do have your children review the terms of their lease. Sometimes landlords try to push people out early without providing proper notice, hoping that they won't understand or remember the terms of the lease. Worth checking. I'm a Realtor, and I just saw this happen. Poor kids thought they had to leave, and they had the right to stay for another year. If the lease says 30 days' notice, they're stuck, unfortunately. Good luck.
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Cathy, good luck with the trial...and don't leave us!! Let us know how you're doing!!
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Claire, good luck, and enjoy Mr. Tiny!! Keep us posted!!
xoxo to all-
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Pat, what is FDG? I don't see it as an abbreviation. You must be referring to the sclerotic foci, though.
I like your idea about seeing an orthopedic oncologist and will look into that asap. Thanks-
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Joy- I will have my daughter check. Thanks
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