Ibrance (Palbociclib)
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Yes Pat so sorry you had progression too..I am sorry for not saying it sooner I am all over the place
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Cure-ious thank you so much for that. I copied and pasted a lot of what you said so I can say it to my MO...your gonna make me look smart
that is, until she asks me questions about it...lol0 -
Pat Holli and Nicole sorry to hear about your progression no matter when it happens that we have to change treatment it’s very unsettling. Pat you’re always so positive and resourceful it helps us all.
Cureious thank you for always thoroughly explaining this disease. I learn more from your posts than from reading about it.
Tanya
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Holly, sorry about your progression too, but I 'm glad PARP is working well for you now.
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Pat- thinking of you and hoping that the parp inhibitor totally confuses your cancer for many years to come. It’s an exciting option.
I realize we are all different in our response to treatment and it is a crapshoot often-just wanted to throw out that when I progressed on IF and got a second opinion at UCSF, she told me she didn’t care what a foundation 1 test showed at this point - she would still recommend the AA for me. She said maybe down the line it would be useful. So I haven’t done it yet.
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Just thought I would post about my last scan. It showed a mass in the pancreas that my doctor said could be pancreatic cancer developing separately (as BC doesn't typically metastasize to the pancreas). Just my luck! I thought having MBC was my lifes worst case scenario. After a CT, many labs, endoscopy, biopsies, and a 4 day hospitalization because the procedure caused acute pancreatitis my MO says my pancreas just contains some inflammatory cells. I'm delighted not to have pancreatic cancer, but why in the heck is does my pancreas have "inflammatory cells"? Anyone else heard of this? Other then the pancreatitis caused by the procedure, the GI guy says no signs of pancreatitis. I do have some occasional stomach pain that correlates with this, but otherwise asymptomatic.
Also, i have a ton of side effects compliments of I/L, but wanted to mention to you hot flash sufferers that I have been on effexor since may with HUGE reduction in hot flashes. Went from ~20/day to ~5/week. 37.5mg of effexor has done wonders for me (and I might say my mood is a tad better as well)!
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KelQ, we don't have to look far to find something to celebrate on this thread. Today I'm thrilled that you don't have Pancreatic Cancer and I'm doing a little dance for you!
Thank you, friends, for all the good wishes. I'm really pumped about possibly getting a PARP Inhibitor in there straightening out my weird DNA! It also thrills me to know it's working for people who aren't BRCA+!
I hope no one is discouraged about Ibrance and its ability to work long term. There are people who've been on for over 6 years (maybe longer) who were part of the trial. I could probably continue but Lynparza seems like an excellent option for me.
Love to all of you from PatGMc
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Love you PatG. Nicole stay strong...your getting good advice and am sending a lot of positivity coming your way. Curious what would we do without you.0
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Cure-ious - There is a PARP thread, but those posting on it have either moved on to a different treatment, or no one posts for months at a time. So, I've sort of stuck around here for support.
The PARP inhibitor is a great drug. I find I have fewer SE with this one than Ibrance. My counts have been normal and I don't have the nasty SE of the estrogen blockers. My body is free to have estrogen circulating around. It's great! Yes, I chatted to my MO about non BRCA+ patients. They are in the midst of doing studies with them. Fingers crossed this will be a standard of care treatment for all who have BC. KelQ - Soooo happy you don't have pancreatic cancer. I bet that is a huge weight off of your shoulders.
Pat - Hope we can do the Lynparza Lindy together. I think you'll find it tolerable. Please let me know if you have any questions.
Nicole - please let us know what's on deck for you and your treatment plan.
Love and hugs to all those that are still doing the ibrance dance... may you have LOTS of MONTHS to YEARS on it.
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KelQ - Pancreatic cancer- what would be the odds of having that as well?!! You remind me of when I had to calm myself down freaking out about MBC, that I didn't really have to worry about the cancer because I was going to give myself a heart attack much sooner, with all the worry!! Thrilled that they ruled that out!!
I wanted to jump in here and encourage Luce to comment (are you reading?), because she is the only person I know who has had a good run on Abemaciclib alone. And she had really bad liver mets. I think/hope she's still on Abemaciclib, and think she is a genius and very brave for trying it, because it worked and shes had few SEs from doing that..
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Nicole, Pat and Holly. So very sorry to hear about your progressions. Holly, fingers crossed the new drug will continue working!! Thinking about everyone.
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Aaawww Pat, Nicole, Holly....the dreaded progression. We’re all right here and while we can’t physically help at least there is strong support and a place to share.I’m amazed at the wide variety of options which folk here discuss. In fact it’s pretty confusing - I suppose we need to use our shared experiences to help inform conversations with our own teams.
My own nurse is now suggesting moving me from my current 3 week on 2 week off 75mg Ibrance schedule (which I’m coping fine with and previous scan NED) to 2 on and 2 off.... she says I’d then only need attend for bloods once every 8 weeks and this would work out about the same dosage over 80 weeks ( really? I did the sums and it def is a cut!). I don’t see why I’d agree to effectively dropping the dosage yet again, so have kicked the can down the road until next scan in Nov and will ask the Onc where the clinical evidence is that a 2 on 2 off schedule is effective long term and what will they plan to do if I too progress on that schedule, bearing in mind my current plan is working as far as we know.
I have the feeling that this is more about keeping me on a 4 week rotation and workload issues as apparently I’m the only patient on a 5 week schedule. Anyone else had a similar experience?
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Karen,
I have not had your experience, but I, too, have noticed that sometimes work schedules at my cancer center (Hopkins) seem to dictate some of my appointments. I have done my best to do a run around that and to try and set my appointments when they work for me. It's worked decently so far, but I didn't see an oncologist in August after my very first round of Ibrance/Faslodex because of the "vacation schedule" in the breast clinic. So I definitely think you are on to something there -- I would stick to my guns and my gut!
Bev
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Karen- I have not had your experience. All I wanted to say is, if it is working why mess with it. Crap with their workload issue. You are the important thing here. They need to work around your schedule. And how about the clinical evidence of effectiveness?????? Just my thoughts.
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Karen -- I'm not a doctor nor do I play one on TV, but as candy-678 said, if it's working, why mess with it? If my wife were NED on 3 weeks on and 1 week off, I'd be EXTREMELY skeptical about changing ANYTHING: I'd recommend keeping meds the same, sleeping on the same side of the bed, continuing to eat an apple a day, whatever you're doing that's working, I'd keep on doing it. Maybe 2 weeks on and 2 weeks off will work fine, but maybe it won't. More frequent bloodwork is a small price to pay to be NED IMO. Good luck on staying NED.
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Nicole,
I am so sorry to hearing about the progression. I'll be praying for you. hugs to you
I got my imbrance today. I have to to admit not real excited about starting.
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PatG, Nicole and Holly, I’m so sorry to hear of these progressions and you are all in my prayers. Pat and Holly, I don’t know anything about these PARP inhibitors or Lynparza and I hope to keep it that way but I know where to come if I need great advice AND moral support. This forum and all you wonderful cheerleaders and smart women (Cure-ious, I’m looking at you). have lifted me up and given me hope for the future. I feel together we can make a difference in this ongoing battle we are in. I hope you all stick around especially our head cheerleader PatG. I’ve never known such a positive person in my life. I love how you think. I’m trying to take my life lessons from you and you can be assured you and everyone here are in my constant prayers.
Love and prayers,
Faith (in the future).
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As some of you know already breast cancer.org was on Good morning America Oct. 1st. I attended to represent MBC. The organizer was Melissa she’s the one in the photo i’m Attaching to the right holding our banner. Just wanted to say that the support you all give and get here is amazing. On the show they did talk about MBC, upcoming treatments, fasting 13 hours daily showing a decrease of 30% in cancer, diet, exercise. Robin Roberts and Amy are survivors. Dr. Funk was there promoting her book The Breast care manual. I’ll take a pic of that later.
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also all of the other ladies are on breast cancer.org but not necessarily stage IV
Tanya
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Exciting, Tanya!!!!
Waving at you, Faith!!!!
PS Actually, you DO want to know all about PARP inhibitors- they aren't just for BRCA patients anymore! Its still early days, but they are testing various biomarkers and say it may be possible that the majority of us might turn out to be responsive to a PARP inhibitor- could be yet another bullet in the arsenal, with not bad SEs!!
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Thanks for the good wishes as I make plans to do the Lynparza Lindy with Holly!
Since I've been getting the Ibrance free from Pfizer (God bless them!), I was a little anxious about finding Co-Pay Assistance for the new drug which is way up there in price like Ibrance. My first dose would be $2500 out-of-pocket, then $750 through December and back up to $2500 in January.
Here's the really lovely news! United Healthcare (my supplement) called to say I was pre-approved for Lynparza and they transferred me to the pharmacy at my hospital. The tech there told me they didn't accept my insurance and I'd have to choose another. We discussed that for a while and she got a little frustrated with me and handed me off to Sean, the pharmacist and my new best friend!
After Sean and I bonded he said, well, I could actually get my drug there if I was willing to pick it up at the hospital and not have it shipped. Since I said Yes to that, he could actually then discuss the price with me. When I told him I had been getting Ibrance free, Sean (my new best friend) said they had a foundation that might have some available funds and he tap, tap. tapped on his computer and said I could pick up Lynparza in a couple of days with Zero Co-Pay! I asked how long this would last and he said there was no time limit. (Now it's not in my hot little hands yet so anything can happen, but I'm full of hope!)
My new best friend, Sean, also said......(drumroll) "People are really having good results with this drug!" I've never had a pharmacist say anything like that to me. I love Sean!! (Three times in our conversation he said, "I'm here for you.")
This is my promise to all of you. Every time I take one of these pills (4 a day) I will pray for each of you. Prayers for what you're taking now and prayers that Lynparza might be your drug should you progress.
We're not done dancing, friends! PARP it up, baby!
Love from PatGMcBlessed
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Good to hear PatgMc. On my F1 testing done at diagnosis (2017) it showed a PARP may work for me. Hopefully that hasn't, or won't, change over time and maybe this drug will work for me in the future.
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Faith, thank you for those kind words. I will treasure them.
Love from PatGMc
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Pat! Glad you found Sean! I pay nothing for Lynparza. And yes, there is copay assistance. I think there is more money to be had with Lynparza due to the fact there aren't as many people taking it.
Cure-ious, definitely to understand and learn about parp inhibitors. PARPs attack the cancer cell in a totally different way. The PARP enzyme/gene helps repair damaged cancer DNA cells - helping them to replicate. The inhibitor stops that from happening. PARP inhibitors are not dependent on hormones. (Right?)That is the best part about the PARPs. You're not taking so many different drugs. But I am sure you know that already. The SE are fewer - less chance of ANCs going down, no hair loss, fatigue, etc.
tanya - so cool with GMA!
Edited to add in DNA and to clarify my run on sentence with two different thoughts.
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Parp it up Pat! I’m excited to hear of the good results being are having on Lynparza and to read if the tolerable SEs.
And Sean sounds like an incredible pharmacist, human being, and man to recognize not only how fabulous and worthy our own PatMcG is of his special attention but for how much his words can mean.
Just what I needed to read this evening
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Pat, Nicole and Holly, so sorry to hear about the progression, hope the next line of treatment will work for a long long time!
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So very sorry to learn about your progressions Pat, Holly and Nicole. Good luck Holly Parping it up and well done Pat not only Parping a long but meeting the lovely Sean. Nicole I hope that you find a treatment that is kind to you and works for a very long time. Also thanks Tanya for speaking up for MBC on TV. Cure-ious and everyone else who gives advice and understands the science thanks for being so generous and sharing with the rest of us. I have a ct scan next week and would love to be lucky enough to start cycle 40 of I/L but if not I do hope that I may come back here and continue to learn from you all.
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I've been ghosting as I can't find the words to say how sorry I am that you, Pat, Holly and Nicole have progressed. Having now read more about your future treatments, I'm grateful for so much positivity!
I pray often for everyone and their family and friends here and will continue to do so, no matter where you roam! I'll reiterate what so many others have said....don't forget to come back and visit as often as you can.
The door is always open! I'll miss you too...
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BevJen, Candy and Mike, thanks....you’ve helped firm up my resolve
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Here we go again. Actress Diahann Carroll has just died "of complications of cancer." I just found an obit in the Washington Post that actually says she was treated for breast cancer in 1998. So my guess is that it was complications of metastatic breast cancer. Why can't they just say this??? So frustrating.
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