Ibrance (Palbociclib)
Comments
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Ahslyn, doing a happy dance here for you. That is awesome news!!! Yay!!!
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Ashlyn, doing a happy dance here for you. That is awesome news!!! Yay!!!
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Wow, Ashlyn, your results are amazing - so happy for you. This is a day to celebrate! I, too, got that nasty cold with a sore throat so bad I'd wake myself up at night from the pain of swallowing.
Jaycee, I hope you bond well with your new MO. It's so critical to have a trusted partner in this journey.
Jensgotthis, I'm following your posts closely as just 6 months in I've hit an energy wall. Hoping it's lingering effect of an earlier cold. But, as Pat said, if this continues, I will request the lower dose. My MO refers to the discussion as "a negotiation." She will present her clinical case, but ultimately will support my decision. Like you, I'm focused on exercise and diet for now. Even for Superbowl Sunday, trying to limit the bad and pair with some good - muffuletta isn't too bad, right? And if I serve carrot sticks with chips, I think they cancel each other out.
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Janet. Thank you for your work. This so important.
Ashlynn. Congratulations, awesome news.
Amaranths. Praying that Havelan in the right drug for you.
Jo
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Jengotthis, I was training for a high altitude trek in Nepal that I was leading for the second time (crazy but first time was just before my fist BC diagnosis 5 years ago) a year ago and succeeded in May. Now I seriously have trouble dragging out of bed. I would love to be in a study about this but for anyone to say that there isn't any (or even little) evidence that Ibrance does not cause fatigue should really talk to us.
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Ashlyn, so happy to hear of your fantastic scan results. Hope you ride the Ibrance train for a very longtime.
Thanks for the commiseration about the fatigue and what my ONc said. He’s an outstanding clinician andI do trust him. I guess it comes back to a need for clinical trials to not focus on maximum tolerated dose only. I’ll work very hard the next couple months doing everything in my power to improve things, but if I don’t see improvement then I’ll insist.
Also wanted to follow up about his suggestion to me last year that we might be able to take Ibrance away and bring it back when we need it. He’s changed his mind on that as they see that it works for only about half their patients. The other half end up with hard to control cancer.
To end on a hopeful note, he said there’s a very real chance this drug will work for years. I know I’m nearing my 2 year mark, which is the median for PFS, so I’ll hold onto that.
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This coming Monday I am starting on Ibrance and Faslodex after 10 months on Taxol. My fatigue on Taxol got to the point that I told my MO that the word "leaden" would be more appropriate than fatigued. I did get an RX for Ritalin and it has made a huge difference in my QOL. I don't really like taking meds (isn't that crazy after basically being poisoned by chemo) so started with one every other day or so and finally said FTS and now take it twice a day. I can time the afternoon dose so that I can actually make dinner and even last through dinner if I want to!
Sylvia0 -
Congratulations Ashlyn! How wonderful! I'm thrilled for you and it's encouraging for all of us to know how well you're doing on our treatment. Thanks for sharing your good news.
I also have some good news to share, not quite so exciting but it's good enough to be pleased about. After a year on Ibrance and Letrozole my CT scan showed my organs are still clear. The bone scan is still showing stable disease. I'm quite delighted with this as I was a little bit nervous this time.
My other good news is that, after always needing to have a two week break from Ibrance until now, when I had my blood test on Tuesday after one week's break, my neutrophil count was .99, SO close to the 1.0 it has to be to start a new cycle. I went again on Wednesday morning and had another blood test and it was 1.36!! I'm so excited about this because this is the first time my level has been high enough to start treatment again after one week and it's the highest my level has been since I started on Ibrance. Even after two weeks off it, up until now my neutrophil usually just scrapes past the 1.0 mark...usually about 1.11. So this means more treatment can be delivered and I'm expecting to see an improvement in my next scans.
To those who are finding odd pains around the rib and other areas when they're coming towards the end of a cycle of Ibrance, I find the same thing but the pain dissipates once I start back on it. I can't explain why. I also find that stretching and isometric/yoga type exercise helps with the achy joints and muscles caused by Letrozole. This might help someone, I hope.
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Great news, Leapfrog!!
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Thanks, JoynerL xx
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Yeah! Leapfrog and Ashlyn.. great great news!
My onc does Pet scan instead of CT.. wonder if that's because I have mets to lung..not bone? I go in this week, haven't had one since May. I can relate to loosing my mother young.. she died at age 56 from lung cancer. I really see how treatments have become more humane and improved quality of life.
I was doing so well on the 100 mg of Ibrance that my onc bumped it up to 125 mg and I've been soooo so fatigued and increased other side effects. I asked to go back to 100 mg where I hardly noticed SE's. I guess scan results will determine next course of action.
Love that we advocate for ourselves... we are all so different and this is such and medicine such not a perfect science.
Group Hug all!
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I, too, got terrific news yesterday about last week's PET/CT scan - NO uptake worth remarking on! I've been on Ibrance/letrozole since Aug 1st, and at that time I had cancer cells in my left breast (where the tumor had been removed) and a 2cm tumor near my T11 vertebrae. On last week's scan - NOTHING showed up in either place, and the rest of my body showed "no abnormal uptake". Oh, and the "lytic lesion" (explained to me as a tear or hole) on the T11 vertebrae -- completely healed! The only thing remarked on in the report was "statistical noise" in the liver, whatever that is, but showed no uptake, and was exactly the same as the scan last July. Hooray!!
I was so nervous, going in. When I got to Sloan Kettering, they told me the doctor had ordered some extra tests, after seeing my scan report, so they needed two extra vials of blood. Of course, I thought they had found more tumors, and were going to run different tumor marker tests or something, so by the time I got up to my doc's office, I was shaking, almost in tears. My husband kept repeating my grandmother's mantra - don't borrow trouble, just wait and see. When she walked in the exam room, carrying a folder and grinning from ear to ear, I was completely disoriented. She waved the folder around and practically sang, "Excellent news!" then stopped at the look on my face. I told her I didn't know what was going on, with the extra blood work, and she was furious that they had done the blood work before sending me upstairs. Apparently, she had told them to send me straight up to her office (sometimes they do the blood work first, sometimes the office visit, depending on how busy they are in either place), and they screwed it up. The two extra vials were for a clinical trial, for women who have measurable success, to study the DNA to try and find out why it works so well on some and not others. Big sigh of relief!
I'm staying on the Ibrance 100mg and Letrozole, but she took me off the monthly Xgeva shot, and replaced it with twice-yearly Prolia (lower does of the same medicine). Yay!
Hoping everyone else waiting for news gets GOOD news!!
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Ciaci, such terrific news!! It is greatly to your doctor's credit that she was furious that you were treated as you were and made to go through agony for nothing. But the good news blows that away!! HOORAY!!
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Wow, I am glad I checked this thread today. Such great news! Ciaci, Ashlyn, and Leapfrog, congratulations for those good scans. WOOHOO, WOOHOO, WOOHOO! Leapfrog, I realize that I already posted to you on another thread, but good news deserves multiple posts. Ciaci, your MO's words must have taken you from the ditches of fear to the clouds of celebration. I put you into my brand newly created Hall of Measurable Success. May we all join you there soon. With all the good news from you, Ciaci, Ashly, and Leapfrog, I will be doing my happy dance for the rest of the day. WOOHOO, WOOHOO, WOOHOO!
Hugs and prayers from, Lynne
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Ciaci and Leapfrog, wonderful news! Yippee! It is great to read all of the positives this morning.
Frenchhorn, my onc does PET scans also and I had mets to both bones and liver. I will be thinking of you this week. I have one more month to go before my 6 month scan. I am already a little nervous...
Have a strong day everyone.
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My heart and spirit has been updated today with all the great news! Cheers to us all fighting this disease and doing well. I too have been doing CT scans instead of PET scans and I have mets mainly in the lungs and some small nodules in the liver and bones. I had inquired about PET scans instead but I don't think the cost is covered by our health system here in Canada. So I am expected to do bone scan, ct scan every 3 months. I had a MRI done to check for brain tumors which came back clear. I think I will still request to get MRIs every year or 6 months. I wouldn't want to wait until I show symptoms then to treat it. Although, by far, I hate the MRI scans the most. Had to keep singing the Oh MacDonald song in my head in order not to feel claustophobic. Maybe I need to come up with a better song lol!
Keep the positive energy coming!
Hugs to all!
Thereishope4us
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Love hearing all the good news. It is so uplifting. None of this is easy, but we keep plugging along. So, yeah...yeah0
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Leapfrog. Ashlyn, and Ciaci - hooray! Happy for your wonderful news!
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Good for you Ashlyn! Wishing you many, many more stable results!
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Including a "good for you" to everyone with successful scans! You give us hope!
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I'm so glad I dropped in! All this good news is wonderful and every success for one of us is a success for all.
Hooray for Leapfrog. Ashlyn, and Ciaci!I always imagine how great it is for someone new and just starting Ibrance to join this thread on a day filled with such hope.
Here's to the Pioneers changing the world of MBC!
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Ars/Sylvia, glad to have you here with us on the Ibrance thread. Although you did join us smack in the middle of a fatigue discussion after you just went through the leaden fatigue of Taxol. Hoping this protocol treats you more kindly.
Leapfrog, congrats! And thanks for the rib pain comment. It helps to know that weird pains can persist as the treatment continues its good work.
Ciaci, great, great news. Measurable success. Pop the cork! (Lynne, I'll buy a ticket to that Hall).
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Thanks so much for celebrating with me! I'm sooo relieved and feel at ease right now which is a nice change. Even if my MO says NED is rare for ER+ I see so many that are (though not sure if they have lung mets) either way I'm hopeful I'll get to NED.
And congrats Ciaci and Leapfrog also! YAY!! Makes me so happy!
PatgMc: I love what you said about the radiologist under reporting my results. I'll go with what you said!! Definitely relieved to see early response to this Letrozole / Ibrance combo.
PET vs CT: my MO prefers CT because less radiation but I know it's cheaper too. And another oncologist I've consulted with says PETs rule. They're the ones that show the SUV uptake. Tumors may look like they've not shrunk on CT but on PET may actually be dead. Just not shrunk down. My next scan will be a CT again but then after that one I'll be asking for a PET.
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Ashlyn, I'm a big believer in PET/CT because of my rapidly diminished uptake after 3 months and then again at 9 months. If we were just looking at "shapes" (my word) I wouldn't feel nearly this confident. I also wonder if some friends here might actually be in better shape than they think.
Whenever I think about what a particular scan shows versus reality, I think of my friend, Judy, whose MBC brain mets were treated with Gamma Knife + Whole Brain Radiation years ago. One year after having that done, they read her scan and said the tumor was back. Within a week she had a craniotomy to remove the tumor.....only it turned out to just be "radiated mush" and not cancer!! Judy has had mets to her lungs, to the ribs and to the brain and she's still rocking along. Long before Ibrance or anything like it, she chose to have 4 MBC tumors in her lungs surgically removed. Years later she also had a rib with MBC removed. I've lost track of the exact number but it's been years since she's had treatment (besides a seizure medicine after the craniotomy). Judy's son was two years old when she was diagnosed. He has now graduated from college and moved to Seattle for his dream job with Microsoft. She now goes years between scans!
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yay to leapfrog, ciaci, and Ashlyn! I go next Thursday for my second bone scan so let’s hope it goes well.
Been having terrible pain this round and sleep my sleep has been rough. My pain is in my back/shoulders but more so this round. Also a little foot pain from walking too much? And tonight my right underarm where they removed lymph’s has been hurting and just bothering me. I see my onc on the 14th.
Plus worrying about my sister’s hasn’t helped. One is pregnant due with baby no 4 on the 17th and my other sister who is on a clinical trial for her ms is having another release (her left side she can’t control) just yeah.
Hoping for more good news ladies!
Chani
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Pat ! What an amazing story about your friend Judy ! that does give hope, my goodness.
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Thanks everyone for your congratulations. I'm very interested in the comparison between CTs and PET scans and, Pat, your comment as well. It makes sense to me. Congratulations Ciaci! I'm thrilled for you too.
I'll be back (as someone once said). I'm not feeling too well today. My fault because a friend visited and I talked too much haha.
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Seems every time I jump on this board to check on you gals...I hear nothing but wonderful news!!
Pat...What an amazing story about your friend. Uplifting for all of us in any form of treatment.
I had my 9th Taxol infusion yesterday. I am scheduled for a CT scan with both IV and oral contrast on Feb.9. I will see my onco on Thursday Feb.15 to go over results. I guess the results will determine what's next. I may continue with Taxol or put on a hormonal pill of some kind. I'll fill you in at that time.
Meanwhile...Hope that Ibrance train keeps moving doesn't slow down for you gals.
Hope
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Ashlyn great stable news.
Jens I’m ibrance fatigued and am on 125 mg. I’m starting my next cycle on 100 and Pat gmc I’m telling my onc after my scans on Friday that I want to go to 75mg
Tanya
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Hello lovely ladies, I would like to share a few words about my meeting with my new oncologist today - we met for a "conversation" so she could share with me the results of the recent CT scan and MRI. She showed me a picture of my spine with little holes in it here and there and one big hole in one vertebrae. I also asked her if the recent biopsies of my skin showed a sensitivity to estrogen. She looked it up for me and said -- no sensitivity to estrogen.
No sensitivity to estrogen ! That explains why the Ibrance could not work, it is only for estrogen positive cancer.
Now I had to beg for the biopsy with my previous onco, and I had to insist many times that they look to see whether my cancer was still estrogen sensitive, because in the beginning it was a lot (90 % at first diagnosis) and then only 20 % after the mastectomy. Then when the cancer came back two and a half years later, it was up to 90 % again which seemed reassuring -- but I was told not to be too hopeful, as it was likely to eventually morph as the previous bout of cancer had. I had been insisting and insisting -- goodness know how many times I said that I would like to know if it is still estrogen sensitive - and that I could see the skin mets spreading and flaming across the chest at an alarming rate all during my time on Ibrance and for much of my time on Afinitor.
I not only had to insist to get the biopsies done, but after that I had to keep asking to get the results ! until finally my new oncologist came on board and she finally went about getting ahold of the results for us.
So there it is. Finally the answer : no sensitivity to estrogen .... letting that sink in -- I am so so so glad the new oncologist had the sense to switch immediately to chemo, and so glad she shows me the images and explains things, so glad that she answers my questions, and doesn't treat me like an idiot. I just have to say, absolutely all of my hunches about what is going on in my body have been accurate. I have never been wrong, and up until now it has been so hard to be taken seriously, or even respectfully.
I want to say, if there is a doubt, ladies, stick to your guns until you get an answer.
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