Ibrance (Palbociclib)
Comments
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Wandering, five years -- wow! That puts a smile on my face.
I echo what you and our friend Pat wrote. When I was diagnosed de novo with bone mets 22 months ago, my only experiences had been terrible ones. I'd lost both my mother and sister to this beast, in short order, just a couple of years earlier. Along with my DH, I'd done a lot or caregiving over their final two years. It had takne over my life .
I felt like my life was finally getting back to normal. I was getting my strength back, and could focus on my kids again, when the terrible pain knocked me down. When they finally figured out what was going on and made the diagnosis, I felt like I truly knew what hell was like.
And here I am ... back to my part-time job, active, loving every moment with my DH and kids. I thank God and modern medicine every day that I breathe this sweeet air.
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Thank you so much PatG!
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What remarkable results JoyneL! Sounds to me like a vacation is definitely called for! One question, is Faslodex like Letrozole/Femara? That is the med I take with Ibance and Xgeva.
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Janet, I'm so sorry that I missed your friend, but I agree....two friends at least geographically close!
Itdoesn'tfeelreal-
There are those on this site who can answer your question. I cannot, unfortunately. I believe that it was a toss-up with my onc as to whether to put me on Faslodex or letrozole, but they are two different drugs. Others more knowledgeable may step in?
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Ibance seems to be very effective for so many people, including you, holmes13. I hope your pet scan results were all good! I've never had one of those tests. Do they reveal the nodules more clearly than mri?
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It doesn’t feel real, Faslodex is an ERD — estrogen receptor down regulator. it works differently than Letrozole (an aromotase inhibitor) to suppress estrogen. It’s another option for for both first and second line treatment.
So very glad we have options!
Joyner we’ve often compared notes on how similar our trajectories have been. But that’s different.I’ve always been curious why your MO chose Faslodex first. If there is any more to share please do. Thanks!
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KatyK, I never know what is causing what since I stumbled into this with pleural effusions which turned out to be caused by cancer. SE to that is anxiety, fatigue and definitely shortness of breath. Multiple thoracentesis provided relief. Haven't had one of those since July, and the tumor maker numbers have dropped a lot, so the meds seem to be working! I take 125 mg Ibrance, 2.5 mg Letrozole daily and a shot of Xgeva once each month. Your strength sounds wonderful! Enjoy your camping trip!
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5 years wandering! That is wonderful! Go Ibrance Go!
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Penny - 78, I was also dx'd de novo just this May. Some surprises are not so great. I have an older sister and cousin who are bc survivors but they weren't dx at stage iv. My younger sister and a coworker were stage iv and both succumbed to cancer within a year of their dx, though neither one had bc. So I was feeling pretty much done back in May. But the oncs have said all along that there has been much more research into bc than many other types and as a result there are lots more weapons to use against it. And the posts on this site are eye opening and so encouraging! Thank you one and all for the information and support!
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JoynerL - I'll search for the answer too. But there definitely are lots of different approaches to squashing this bad character! Thank you!
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Penny 78 Thank you for the information! I'll have to start logging these different drugs somewhere. I have an older brother who has worked in a health food store for 30+ years. He suggested I consider trying some medicinal mushrooms. I haven't done so yet, but passed their names onto my onc to run past the pharmacy team. The shrooms are named Chaga and Turkey Tail. Love the names! SE might be urge to dance!
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My story...I was dx Stage IV mbc de novo back in May 2016 after a suspicious shadow in my annual mammogram. I was put on Ibrance/Letrozole after the initial MRI and scan, with no surgeries, chemo, or radiation due to the extensive mets in my bones and liver. There has not been a tumor seen in either breast as mine started in my lymph. After one year, my PET scan showed no evidence of active disease anywhere, including my liver, and I have remained clear from then so I am now 25 months in. I see my onc Thursday to receive the news of my latest scan taken last week. Some days I feel pretty good and can do quite a bit. My main complaint is lack of stamina and lots of fatigue. I am 65 so I went on disability and retired so I could enjoy as much life I can. I am not sorry for my decision. I am thankful for current research and the support of so many wonderful people on this website.
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Always happy to share my success story here!!
Just the highlights: I was diagnosed in May of 2017 after a routine mammogram (my first ever, at age 55, because I kept putting it off). I finally talked my shy self into doing it, and was floored when the tech casually asked if I had always had that dimple on my upper chest. Dimple? What dimple? I'm overweight, so just thought it was another crease...
Turns out it was Stage IV breast cancer attached under the skin. I had the tumor removed (which later turned out not to be the preferred course, but I'm really glad I did it!), then a CT - and later PET - scan showed a bone met in the T-11 vertebrae. Biopsy confirmed it was also ER/PR+, HER2-. I started Letrozole and Ibrance 100mg on August 1, 2017. My follow-up PET scan in Jan 2018 showed NO bone met and the lesion on my spine had healed, and I had "minimal" FDG uptake. DH and I celebrated by going to Vegas for a week - my avatar is me riding an ATV for the first time in my life and having a ball!
Second follow-up PET in June 2018 showed NO evidence of cancer. At all. Anywhere. To celebrate, DH surprised me with tickets for a cruise to New England/Nova Scotia (my dad's family is from Nova Scotia, and I've always wanted to go). Apparently on the cruise, they have a skydiving simulator... looks like I'm going to get a new avatar!
I like to tell "newbies" that if I knew then what I know now, I would have ripped open that first package of Ibrance and taken the first capsule while dancing around the kitchen, instead of bursting into tears while clutching that stupid yellow bag with "TOXIC" written all over it... Side effects for me have been minimal. I get tired, but I'm retired, so taking a nap when I need it fixes that. Lately, I've been having really annoying hot flashes, but I consider them a small price to pay - and I have an appointment for an acupuncture consult tomorrow.
I expect to be around for at least another 40 years (I'll be 57 in a couple of weeks, and many women in my family lived into their 90s)! Love and luck to everyone on this journey!
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Hi Ladies. I'm just checking in to say that my IR ordered an MRI for my liver. I had it done today! So can have a consultation with him next week about y90 or another type of local procedures. I leave tomorrow for my reunion trip on the lake.
Not as adventurous as your sailing adventure JoynerL, but it will be fun for me. It was me, actually my DD, who has the friend who lives on Kent Island. I go on that trip September 15-21.
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Itdoesn'tfeelreal-- great news! Keep it up!
Thanks for the good wishes about my CT Scan--I see the doc on Thursday and find out results then.
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Ciaci--great story! Thanks for sharing!
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IWrite......IntoLight..... and others, thanks very much for your encouragement. I spoke to my oncologist about the results last week and feel very confident that I'll be around for many years yet, which has given me the impetus to get on with my life the best way I can.
The apartment I was staying in previously was my son's and he has moved back there and is loving having the garden I made there. The one I'm in now is only 5 minutes away from his and, although it has a balcony, it's not suitable for a garden as it's too windy and open so I'm making the inside into a jungle as my latest project and to take my mind off my husband's obsession with the young woman he's mentoring. Some people think differently but I do believe it's a mentor/protegee relationship that has become co-dependent.
A lot of the plants are artificial because there isn't enough light but a lot are real and I intend to get more, until it's filled with plants. That way I will keep my sanity. I think it was you, IWrite who reminded me how I kept ahead of things the last time it all got too much for me but so many pages have gone past I'm not sure.....I've given up writing the blog because I felt it was making me too inward looking.
This apartment had been allowed to get run down but since I moved in a month ago I've had a lot of visitors and have been kept busy as my friends are offering help to improve it. I do as much as pain allows. But I have plans to find a way of buying an apartment of my own in the same building as my son if possible. It could take six months but we're being patient as we believe it's meant to happen and it will if we're patient.
I've had an epiphany of sorts and have decided to view my cancer in a different light. I now see it as a passport out of an intransigent situation at home. Without it I never would have been able to leave but I believe that I am being led down a path towards finding my own way of life. To have a Stage 4 diagnosis, BMX and find out your husband has been cheating on you for 12 years, all in the space of one month was bound to eventually catch up with me and give me delayed depression but I'm onto it now.
Sorry to talk only of myself and, to those ladies who don't know me because I've been quiet lately, I apologise because you don't know my story. I just wanted to reassure those who do know me that I am finding my feet again and, more importantly, my determination.
I'll catch up on all your news when I can but meanwhile, thanks for your patience, love and support.
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I’m loving all these positive optimistic stories!!! They help so much!!
I was diagnosed de novo April 5th, 2017 with extensive bone mets (spine, pelvis, scapula). My MO told me at that time that my prognosis was 1-5 years. What a mind trip!!! I’ve been on Ibrance letrazole xygeva and lupron ever since and there is no palpable tumor in my breast anymore scans were clear for cancerous activity in both my breast and bones.
I am soooo grateful for the medicine and for life!!!!! Celebrating and loving as much as possible.
Love what Ciaci wrote about getting the new bottle of Ibrance and all the scary labels. I went through ALL that and couldn’t agree more. I would totally dance around now and take it without any hesitation.
Today I did an intense cardio kickboxing class and felt like a badass
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Leapfrog, I had no doubt that you would find your way. You are a Warrior Woman with cheerleaders here from across the world. You cannot fail! We are each living this MBC journey in our own way. Some of us are fortunate enough to have partners who smooth the way. Some have children who give them a reason to fight while others walk the path with good friends or precious pets. We all have a loving Creator who wants us to find joy in spite of the suffering, the disappointment, the pain of this life. I'm struggling right now over betrayal by the husband of someone I love very much and I can get really caught up in a fantasy about his eventual suffering....(perhaps driving into the river? Oh, shut my mouth!) I hope you keep finding your joy among your plants with the love of your son and friends. I'm pretty sure God has a plan for those who betray others.
Love to you from PatG
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NeoGirl - I am still laughing that a bear stole your Ibrance! That is my favorite story ever!
Ciaci - Thanks for bringing up the acupuncture idea for hot flashes - and for the rest of you who chimed in. While I don't want to add yet another appointment to my schedule, this one might be worth it. I am constantly hot and I hate when I sweat profusely from the neck up while in an air-conditioned meeting at work!
ItDoesn'tFeelReal: adding on to what Penny said: " Faslodex is an ERD — estrogen receptor down regulator. it works differently than Letrozole (an aromotase inhibitor) to suppress estrogen. It's another option for for both first and second line treatment." I took Arimidex for 11 years after my early stage BC. My MO selected Faslodex with Ibrance as my first line treatment because Arimidex is an AI (like Letrozole) and it's possible that Arimidex failed me (though I think I lasted 15 years between original dx and MBC because I took Armidex and stopping it is what caused my mets, but no one will ever know!) SO some start with Faslodex because they already had an AI. Others who never had an AI tend to start with one of those.
My story - I don't have much time yet in the MBC ranks but I'm nearly 16 years from my original dx. I had just turned 33 when I found the lump (and was told by my gyne that I was too young for breast cancer and to stop worrying). I had lumpectomy, A/C, taxotere, 18 months of Herceptin and radiation. I shut down my ovaries medically and later via complete hysterectomy and took Arimidex for 11 years.
Anyway..... 15 years after my lumpectomy (I'm now 48) in late Jan 2018, a single bone met to the rib was discovered on a routine breast MRI (it happened to be in the scan window - I had zero pain). After confirming with a biopsy and a PET scan to ensure all else was clear, I had 16 radiation treatments to the rib and started on Faslodex and Ibrance. My cancer is still Her2+ so I also get a Herceptin infusion every 3 weeks. A follow up scan in July resulted in NAED so I will continue marching forward, hoping to stay clean on this manageable combo for as long as humanly possible!
Love reading everyone's stories!
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Penny, you're not the only one who wonders why I was started on Faslodex/Ibrance as a first line treatment! My onc when I was diagnosed with MBC was roundly celebrated as excellent and was a leader in a major university cancer center. I had been seeing her for 10 years as a (then) 17 year survivor of BC because my original onc (beloved) had retired. My original onc had put me on Tamoxifen after my initial treatment of mastectomy/CMF and had decided to keep me on it after the first 5 years because he said, "Let's don't mess around with success". At some point after I started seeing the second/celebrated onc, she said that Tamoxifen had "done all it could do for me" and that I should change to Evista/Raloxifen, as it also had properties for protecting bone strength. Of course, I did what she suggested.
When the MBC was discovered by accident during a CT for something else in 2017, I asked this onc what I should do. I also asked her my likely "time left", and as I recall, she said, "2 to 10 years". She recommended that I could follow one of two regimens: Ibrance and Letrozole OR Ibrance and Faslodex. I told her that I would do whatever she thought was the most likely to help me. She said that she would recommend the combination with Faslodex but that some "couldn't stand the shots". I told her that I could stand whatever it took and that I would follow her guidance. Thus, the Faslodex. I have been asked that question about why I skipped the first line of treatment before, and I wonder if she gave me bad advice, causing me to miss a "line of treatment". That said, I'm here and doing exceptionally well.
I left this onc when she: 1) didn't check my blood counts during my first month on Ibrance until I asked that they be checked, 2) didn't order the loading dose of Faslodex until I asked for it after talking with the Pfizer nurse, 3) didn't seem to think it mattered whether I got my Faslodex shots exactly on the 28-day schedule, as suggested by the manufacturer, and 4) forgot that I had had scans when I went in to have my first set read. She's an excellent, caring doctor, but she was overworked and wasn't paying attention to me. I hated to have to leave her, but I did, and I haven't looked back.
My wonderful surgeon got me in to see one of the best oncs in the area (this onc wasn't taking new patients), and I've been there ever since. I asked him if my switching from Tamoxifen to Evista might have unleashed the beast, and he immediately said, "Absolutely it might have." He also said that, as we all know, the original recommendation for Tamoxifen was 5 years. That was changed somewhat recently to 10 years. He believes that the next change recommended will be to stay on forever if SE allow.
Sorry for the long story, all, but this has been weighing on my mind.....
Leapfrog, good for you for the shift of mind-set!
Pat, I'm right there with you....I hope that guy drives in the river and doesn't resurface! I had one of those cheating husbands when I was 26: he ran off with a baton-twirler from Baton Rouge. He got what he deserved (she ran off again with someone else, with me cheering from the sides), and I got my precious husband of 41 years, who's on this boat with me laughing as we muddle along!
Hugs, all-
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And Ciaci, WOW! Fabulous story which encourages all of us!
You're going to continue with your Ibrance, though, aren't you?
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My understanding of letrozole or falsodex is determined by if you had taken tamoxifen or some type of AI in the past. If you had you take faslodex if not you take letrozole. When I first had bc ten or so years ago I tried tamoxifen (only option since I was premenopausal) but could not handle the terrible SE after 4-6 weeks so I stopped taking it, maybe should not have. Since it was such a short time on tamoxifen I take letrzole now and maybe falsodex later. Also who takes xgeva and how are the SE with it? I’m taking zometa infusion every three months and getting to hate it. How’s xgeva? I’m thinking of switching if I can.0
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Yes, I'm continuing the Ibrance and letrozole - as my onc says, since it's working, let it keep working!
I had gone to Sloan Kettering here in New Jersey after switching from a truly negligent oncologist (well, okay, maybe not negligent, but out of his league - he was a general oncologist, and after he typed my cancer as ER/PR+ HER2-, he never once mentioned Ibrance; in fact, he told me I was incurable and there was nothing I could do about it), and my new onc told me we'd start immediately on the Ibrance. I asked her about my life expectancy, and she told me the Ibrance didn't have to work forever - only until the next, better, thing came along, and eventually a cure. She wouldn't give me a time frame, but said she had no intention of letting me die from cancer. Good enough for me!
KatyK, I took Xgeva shots monthly for the first six months - as long as I took Claritin for the five days (2 before, the day of, and 2 days after), it was easy. I had no side effects from the shot whatsoever. Just a reminder to all, the shot needs to be room temperature. My first one was straight out of the refrigerator and it HURT! My oncologist switched me to Prolia (same stuff as Xgeva, just lower dose, and only given once every six months) when the bone met didn't show up on the PET scan at all and the bone lesion had completely healed.
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Ciaci, I LOVE your new oncologist!! Wow...that's what all of us need to hear!
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Joyner - thanks for sharing your detailed story. I think you can go to an AI with Ibrance as an option after Faslodex. I don't think you lost that option by going to first to Faslodex!
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OH, whew, Lauren...and thanks! My "new" onc also noted that Tamoxifen might work again for me if needed at some point. He isn't one to discuss next steps until they are needed, though I have tried to get him to do so!
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Hi Joyner. My previous MO stopped tamoxifen after the recommended 5 years. Five years later..mets. I will always wonder if staying on Tamoxifen would have prevented that. At that time not sure if my insurance would have covered the costs. Apparently in 2012 it was "no benefit" to continue after 5 years. Times have changed.
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KatyK, I am on Ibrance/Letrozole/Zometa. I don't have any trouble with Zometa at all. I get it once every 3 months and ask for a slow drip (30 minutes instead of 15). Only once did I have any flu-like symptoms and I think it was because I went in right after vacation and hadn't drunk enough water. I find if I stay well hydrated before, I have no problems.
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Love to see the Ibrance thread rip-roaring! Lots to catch up on, but in the meantime, going for scans today, and while I thought I would breeze through it this time, scanxiety has taken hold, so asking for prayers please for grace and strength. XO
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