Ibrance (Palbociclib)
Comments
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Cathy, that bike is about the coolest thing I've ever seen and you're totally worth it! Send us a link when you do the crowd source funding.
Your "at least it wasn't a stroke" comment made me laugh. I talked with a man about the day he went in for his brain MRI results. I can't remember his name but let's call him Bill. So Bill and his wife were nervously waiting across the desk for the doctor to speak. When he finally looked up from the path report he said, "Bill, I'm sorry but you have a mass." Bill, with this immense feeling of relief, said, "Oh, doctor, I thought you were going to tell me I have a tumor!" (I love this story because Bill had a terrible kind of brain tumor and he was still living cancer-free 10 years after they found that whatever-you-call-it!!)
About those pains, people....Point to your hormone therapy as the culprit before you assume it's the cancer. I'm not saying don't check it out but don't let it make you crazy. Letrozole is especially famous for aches and pains.
Love from PatGMc
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airlinegal: good luck with your MRI tomorrow. Hope that you get some answers. I know Letrozole always gave me grief with joints in my low back and hip. I used to get acupuncture for it which helped. My infection has not minimized after three days of IV antibiotics. Nervous about being neutropenic at the same time and not being able to finish my full cycle of Ibrance. Hoping that I was properly diagnosed as this hasn’t really presented itself as textbook cellulitis. Two more days of IV antibiotics and then being reassessed agai
Jaylea: thinking of you and glad to hear the treatment went well. You’ve got such spirit in your post. I can feel it!
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airlinegal: hope your MRI goes well tommorow.
Has anybody looked at some of the research that's come out lately on oligometastatic cancer that some now feel could benefit from stereotactic radiotherapy and be treated as possibly curable? Dr. Weichselbaum presented this at the 2018 ASCO meeting.
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Dr. Weichselbaum talked about treating oligometastatic breast cancer with ablative therapy.
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Elenas - yes, I have heard of this and had it done last summer (CyberKnife). I am stable and NEAD...but speaking of tumor markers....mine are are hovering in the 40s and went to 51 earlier this month. PET okay, but now my butt shows some uptake from the Faslodex shots! I've heard inflammation could possibly cause the TM elevation....My recent MRI showed shrinkage L4 lesion for the first time since last May. My tumor markers were always in normal range until about 6 months ago. The only exception was an isolated Ca 27.29 of 50 one time while on chemo in 2016.....so I do not know what to think....trying not to
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Good early morning, to my friends!
Boy did I start a conversation on wigs....the bad thing is I didn't finish it. I started when I was high on steroids and when crash days came, well, the wig was far from my mind. hehe. However, I would like to thank all of you ladies for your experience, advice in this department . ( IN THE WASHER??? That had me laughing for hours, thank you Lauren) Yes, I do see now how a stylist can make it look more natural... Need some wisps to frame my face.
Right now, the wig and I have an uneasy alliance. It's still sitting on my kitchen table on it's Mason Jar. I stare at it, it stares at me. lol.. jk. I haven't worn it yet as I find the little scarfs are much more comfortable. And technically, I still have hair, sorta Think of Capt. Zorba (dating myself)
I also want to thank all of you for your prayers and well wishes. They mean so much. Well, it's Mon So today and on Tues., I should feel pretty dang good. And then on Wed. the taxol infusion starts once again. I thank God nightly that it's no where near as bad as I thought it would be.
Pat,,,,,,in answer to your question......What did I do with $ saved from canceling wig products order? lol. Garden seeds. Gardening and painting are my two passions and all extra (or not so extra) money that I can scrap finds it's way into these projects. Gardening and art are so creative......I feel closer to God doing these things than it's possible to explain.
Well, enough of me. I probably won't be back till after (or on Wed. 's steroid high) So I'm wishing everyone a great start to your week. LOve and HUGHS to all.
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Hi all - Thinking of you, Airlinegal, for your MRI tomorrow. So glad Jaylea's spirit and humor are still well in tact after getting your first dose of magic, yoga pants and all! Snooky - Thinking of you for your next treatment on wed and glad I could make you laugh - even though my wig in the washing machine story is absolutely factual! :-) Cathy - go for the bike and do share any funding links that you end up exploring. Getting out and about it critical to your mental and physical health!
Elena - here's a link to a summary of the ogliometastatic research that you referenced. I have read similar accounts and is the main reason that I pushed for extensive radiation of my single rib met, even though I was pain-free, upon dx.
Love to all, Lauren
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Airlinegal I hope your MRI results are good and you find the answers to the hip pain.
Take care all
Tanya
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elenas401,
I have also been reading a lot about oligometastic mbc. I believe I fall into this category as I have lymph involvement outside of the chest, but no bone or organ involvement and my tumor and lymph nodes are all <5cm. I like my MO, but she says "stage 4 is stage 4". I am headed for a major cancer center in Chicago in a few weeks to see if they have better options for me. Maybe not, but I need to know! Northwestern (where I am going) is doing the study on stereotactic radiation with oligometastic disease. Not sure if I could be a candidate as I am already on letrozole/ibrance, but I'm sure as heck going to ask about that and other options. Happy to report back after my appointment! In the meantime, transferring reports/records/slides/etc to the MO at Northwestern is my second full time job!
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Hi all;
I've decided to go for the bike. I have some money put aside and this is just the thing. This comment by a user really convinced me....not that I was thinking of a scooter but I have not been very active at all over the last couple of years with too much time sitting and falling is my biggest fear (of course aside from you know what lol).
Comment: Why not use a scooter? They are nearly the same price.
Alinker user Christine: 'my scooter got me around but did nothing to improve my health. The Alinker gets me around while dropping my blood sugar, decreasing my blood pressure, cardio to improve my heart, weight loss, improving my overall feeling of wellbeing, strengthening my leg, back and core muscles, and on and on. Finally after years in a power wheel chair and/or scooter I am FREE and have back the joy of movement. Now finally I have hope for the future and am grateful to BE for using her genius to help others.If anyone else is interested in the Alinker but wants to use the crowd sourcing here is the link. I think it's wonderful that they are so organized this way. I personally am not using crowd sourcing.
https://ca.thealinker.com/pages/how-it-works
I'm praying for all with scans coming up and treatments ongoing. Love to you all.
Cathy
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Hi. I was just curious. How do those of you without Medicare and without prescription coverage pay for Ibrance?
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WC3, I hope anyone without prescription coverage will apply for free Ibrance from Pfizer.
Other choices:
Verzenio patients are offered the first 3 months free and $10 a month after that. (Only if you're relentless!!)
https://www.verzenio.com/savings-support
https://www.us.kisqali.com/metastatic-breast-cance...
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Yesterday was my informational meeting about Ibrance at the onc's and I was glad I went. The physician assistant went over some things, then the pharmacist came in to discuss more and finally the nurse was in and wrapped everything up. I asked questions and got a fuller understanding of this next step I'm taking. I told them how helpful the meeting was and they said the meetings are something new they've started.
The Ibrance is set to be delivered today. The pharmacist said not to take the Curcumin/Turmeric supplement. I will get bloodwork every two weeks. The pharmacist said she observes that once patients get things regulated, meaning if there are any adjustments in dosage in the first several months, she sees most tolerate the drug fairly well.
In asking about Medicare and paying Ibrance copays, I was assured they would help me navigate all of that to get the costs covered. That was a huge relief.
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A little side story: when the pharmacist, a woman probably in her 30s, came in the little, cramped room to discuss Ibrance, she brought a “student" named Zach who she said would be going over the information with me. Zach was a man maybe in his 40s, and from what I could figure out, is finishing up his oncology residency.
My husband went with me to the meeting and was sitting beside me. As Zach began talking, he directed most of the information towards my husband while meerly glancing occasionally at me. I finally had to say, “Please tell ME the information. My husband isn’t going to be giving me the medicine or overseeing me to make sure I take the medicine." Zach then adjusted his delivery and the rest of the meeting went fine. But for a few short minutes there, I was feeling like early 1960s Betty Draper in Mad Men when the doctor, in hushed tones, told her husband and not her that she had lung cancer.
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Divine, good that you helped him with his delivery! You provided a service to his future patients.
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Anyone have elevated BP because of letrozole and have to have BP meds increased?I had this problem with arimidex in 2008..and already once on letrozole..which I have been on a year..and its up again..Onc wants me to see my GP..have call into her.for appt.
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Divine; Funnily enough it doesn't have to be a husband. When I first met my oncologist I took along my daughter and he spent the first part of the appointment talking to her until I also told him to talk to me...lol. He was quite embarrassed and said he didn't know why he did that. It hasn't happened again and we get along very well.
Cathy
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lakewoman - oddly enough my BP levels dropped significantly with letrozole and Ibrance. I had been on BP medication prior to my cancer dx, then after I had finished with chemo and radiation, started on the letrozole, we noticed the change so I have been on a much lower dose since then - 18 months now. My BP yesterday was 120/70 which is 'normal' for me at 65. Best of luck!
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I’m on my 2nd month- other than low white blood cell counts and manageable fatigue I have no side effects. Hoping it’s working!! Just dx in 12/18 stage IV 1 net to spine- had SBRT radiation the. Letrozole and Ibrance- scan next month.
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Thanks for the responses to my questions on oligometastic treatnent. KeQI will watch for Your posts after your visit to Chicago.
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Tracy, I'm so glad it's going well for you so far!
I'd like to share this article with you and everyone. I think it's very realistic but also very hopeful. Be sure to read to the end.
https://health.usnews.com/conditions/breast-cancer...
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Elena, I'd read some studies regarding oligometastatic treatment early on in my own journey. From what I recall and what you've shared about your own diagnosis, my guess is that you'd be an excellent prospect for the more aggressive approaches with a curative goal! Just my very humble opinion ...
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Welcome, Tracy. Did they do a scan to see the response to the radiation so it can be differentiated from the response to the new meds (Ibrance, Letrozole)? Don't be too disappointed if you don't get a dramatic response to Ibrance at three months. It sometimes takes a little longer to work, possibly up to six months. Great on the no side effects much. We love that. For most of us, this combo is pretty easy.
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Seaway, interesting how these men oncologists have their signals mixed up when it comes to discussing our health care!
There seems to be such a buzz about the Ibrance. For the last 8 years, the Arimidex was sent to me in the mail, I took it daily, and went about my business, seeing the onc 4 times a year.
With the Ibrance, 3 different health care professionals at the oncologist office went over all kind of information about it with me, giving me a bunch of literature in a folder and telling me they will be monitoring me with phone calls and blood work every two weeks. A CVS Specialty Pharmacy tech calls and reviews everything prior to delivery of the drug to my house, which comes via UPS and I have to be home for the delivery, and then today a CVS nurse overseeing their Ibrance perscriptions called and had more stuff to tell me and more questions to ask and let me know they want to monitor me for the first six months i'm on the drug. Oh, and they're sending a welcome to CVS specialty pharmacy kit, too.
Not that I mind. It's just different. It feels good to know there is such optimism centered around the drug and I hope I am one to respond well to it. Took my first Ibrance pill today.
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Divine,
Congrats on starting your Ibrance. Yes very different situation. I started cycle 16 this week. Hoping many years of good outcomes for you Ibrance.
Gumdoctor
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Divine, yes, the support is a good thing. Wishing you do well on the drug. I did not have quite so much support as you in the beginning, but I am about to start cycle 33. The support has improved with time.
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Wow Intothelight, 33 months! That's encouraging. I'm coming into 2 years now on I/L and hope it works a little longer for me too. Penney78: Thanks for the comment on oligometastasis. What I don't understand is. Why do some oncologists speak of curative possibilities with limited Mets and certain therapy but others , as a post recently brought out say "stage 4 is stage 4" and never curable? Do they think doctors with opposing thoughts are irresponsible?
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Elenas -
For a nanosecond around my MBC diagnosis, ONC mentioned if I were oligomets, we could try for cure. Of course with the CT-guided biopsy, it was clear I was already way past oligomets. So that curative discussion disappeared for me.
At the time, I studied and read everything I could find about it...hoping against hope that it could apply to me...
The idea of treating oligomets for cure is a newer concept. If a patient has a low cancer burden and low tumor aggressiveness, it MIGHT be possible to treat that one or minimal number of areas and stop the process.
The problem is they just don't know all the variables because this idea of possible stage 4 cure is too new. Not alot of track record to build on or make confident tx decisions on.
Some ONCs are comfortable jumping into new treatments and some are lower risk takers and will stick with old-school concepts.
While I am a dental specialist, not a physician, I was trained in the classical medical model of evidence-based medicine and dentistry. If a provider understands the research and trusts the research (we are trained to evaluate research quality as reported in the literature), they can use the research to make evidence-based treatment decisions. If they are high risk-takers personality-wise, they can be comfortable jumping into new concepts and see where things go. If they are low risk-takers, they will make treatment decisions based on concepts, tried and true, with long track records.
I am personally a lower-risk taker when it comes to treatment decisions so I can relate to not jumping into the latest greatest thing right away...
Providers are all different just like everyone else.
Hope this helps to start answering your question.
Gumdoctor
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Gumdoctor: Thanks, I can appreciate what you're saying.
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Hello,
I am one of the possibly unrealistic folks with Stage 4 who has fingers crossed that I qualify for oligomets "cure". I am seeing new MO tomorrow at UCLA. I have a recurrence of lobular after LCIS in 2010 and seven years of exemestane. I have two areas of swollen lymph nodes, one in axillary area, another area in "right hilar chest" and one met in T6 spine. Nothing in organ.
My first MO who is a lovely guy seems quite conservative, and says no radiation, just Ibrance plus. I am going to push the new MO tomorrow for Ibrance plus radiation. I have several articles to give the UCLA MO. There are clinical trials for which I seem to fit...but not in Los Angeles. My understanding is that I don't have to be in a clinical trial to do the Ibrance/radiation protocol, just need a MO who will agree to give it a try.
Anything anyone can add to my analysis? Anything I should be asking the doctor tomorrow? Thanks to everyone for all of your previous help and best wishes to all of us, too!
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