Ibrance (Palbociclib)
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Welcome VFP. I also had a lung nodule show up on initial scans, 4 mm, but after 2 scans with no change my MO said it’s most likely not cancer. No biopsy because I also have liver mets that were proven MBC so I’d be having treatment anyway. (They did show improvement with I/L.). Hoping yours is benign so you can become stage 2a again
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My new MO is a keeper. Because he told me my recent Pet scan had no new activity? Maybe but I just like him. I got him talking about a wide variety of topics and he was in no rush to get rid of me. (Rare) We don't agree on things like topical estrogen use for ER+ patients (like me) but he was open minded. He is willing to test my blood estrogen after I try using a small amount. (I already did a baseline.) He is also against medical aid in dying for which I am a very strong advocate. He seems to have been traumatized by a case in his early years (internship, residency) by a patient with leukemia. I really like that he felt a profound empathy for this patient. This is a good guy. His news for me was good, too. My one largest lung nodule continues to grow VERY slowly. I call it lazy. He called it stubborn. Why? Because all 25 of my other lung nodules are inactive. I've never asked about them before. My first MO told me I had 26. I never asked him because he was such a jerk. He also never offered the info. My second MO was too nice. I never wanted to push her about anything. New MO also told me all my bone lesions (ALL? I thought I had one on my shoulder bone. Turns out I had several, femur, sternum, a few vertebrae plus the shoulder.) are also inactive, sclerotic. Good news all around.
I don't know if it was my imagination or not but the office and chemo suite seemed quieter, less hectic. They are down from four MO's to three. I even got to sit in a recliner. My nurse seemed less harried. The pharmacist on my palliative care team brought me some research on topical estrogen use for breast cancer patients. This is what medicine is supposed to be but I never thought I would see it here.
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Welcome vfp - Sorry you're here but if you end up on IBRANCE, I think you'll find this thread invaluable. Best of luck!
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Jaycee, so happy to read your update! Great news about cancer being either asleep or super-lazy, topped with a dollop of a positive experience with the new MO and the treatment facility - seems like a good way to start the new decade!
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Jaycee, so happy for the good news. Yes, good medical care sadly seems all too rare.
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jaycee49 congratulations finding a MO that you can talk to without being 'hurried' along, even if you don't agree on all issues at least you have the chance to discuss them. I would hope we all find medical staff we like and respect. long may your cancer be stubborn and lazy.
Welcome to all the new Ibrance dancers, sorry you have to be here, but I think you will find the information and support you need here.
As for hair loss and rashes, mine are worse when my Vitamin D level drops. My oncologist now checks all her patients, so it might be worth asking for a blood test.
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So happy for you jaycee !!!!!
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Congrats on the good news jaycee!
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Jaycee,
Great news -- not just about the no progression but about your new MO! Isn't this what we all want? A doc who listens to us and who actually tries to understand what we are going through? Sounds great.
And your news is pretty great, too.
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Awesome jaycee. I love to hear good updates.
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I'm so happy for you, Jaycee.
Love from PatGMc
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Joining in with the happiness for you Jaycee.... about time you had a keeper....but don’t let that change you... I love your acerbic take on our situation!
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Jaycee so happy to hear about your lazy cancer and kind patient doctor.
Take care all
Goodnight
Tanya
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Cheers Jaycee!
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Great report, Jaycee! 🌺
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Congratulations Jaycee! So happy for you!!!
What a great way to start the new year and I hope that your story can be inspiring for us all!
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I haven't been to this thread for 6 months and first I'd like to say that I'm so happy for you Jaycee. Such positive news! I was on Ibrance Letrozole for two and a half years, when it looked like I had progression it was thought that my cancer had changed where now they think I have two primary breast cancers, one ER+PR+ and the other one HER+, . I've been on Herceptin/Perjeta the last six months but now I'll also be going back on Ibrance and Letrozole too. So I'll be back here with all you ladies,again. Has anyone else here been on both Ibrance and Herceptin at the same time? My onc also wants me to have surgery but two surgeons have told me there won't be of any benefit, so that has been discouraging. It's been tough, but I'm trying to stay positive, one day at a time. Reassuring to touch base with this thread again
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Hooray Jaycee, so happy for your good scan news. May all our cancers be extremely lazy and stupid. Glad to hear you finally have an MO you like. That is so important!!
Faith (in the future)
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Folks-
An exciting press release came out on Monday:
I had my after-scan meeting with my MO yesterday and discussed this with her. This treatment is associated with the CCCR5 antagonist (per a Google search, CCR5 is a gene and a chemokine receptor, something related to protein??). I checked my Foundation One report, and as of my test 11 months ago, CCR5 was not among the genes listed as being included in the testing.
My MO told me that like the new Ventana test developed to identify PD-L1-positive patients, if Leronlimab is approved by the FDA, a special test will be developed for the presence of CCR5.
I also found this description of CCR5:
CCR5 and its interaction with chemokine ligands have been crucial for understanding and tackling HIV-1 entry into target cells. However, over time, CCR5 has witnessed an impressive transition from being considered rather unimportant in physiology and pathology to becoming central in a growing number of pathophysiological conditions. It now turns out that the massive efforts devoted to combat HIV-1 entry by interfering with CCR5, and the subsequent production of chemokine ligand variants, small chemical compounds, and other molecular entities and strategies, may set the therapeutic standards for a wealth of different pathologies. Expressed on various cell types, CCR5 plays a vital role in the inflammatory response by directing cells to sites of inflammation. Aside HIV-1, CCR5 has been implicated in other infectious diseases and non-infectious diseases such as cancer, atherosclerosis, and inflammatory bowel disease. Individuals carrying the CCR5Δ32 mutation live a normal life and are warranted a natural barrier to HIV-1 infection. Therefore, CCR5 antagonism and gene-edited knockout of the receptor gained growing interest for the therapeutic role that CCR5 blockade may play in the attenuation of the severity or progression of numerous diseases.
Do read the press release. It seems very exciting, if preliminary.
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And great news, Jaycee (Janet)!! So happy that you like your new MO!
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Lynn,
This one caught my eye too, and I posted it in the non BCO news thread. Santabarbarian then posted it in the Triple Negative thread. I think from the press release that's the type of cancer they've tested but from reading the press reports, it sounds like it could have wider applicability. I think the pending FDA approval is for trip negative. This is very exciting news, though -- the results are amazing.
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So happy for you Jaycee! Glad you found an MO you are feel you can trust.
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Great news Jaycee0
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BLMike - I do not know anything about COBRA. On pfizer website (I do not know if this is the right link) there is info about financial assistance. https://www.ibrance.com/financial-support-resources . On my first cycle,I had no co-pays/deductables. The oncologist told me she had applied for a grant, I think with the pharmacy she sent it to , which was NOT my regular pharmacy, a CSV in Seattle. Then my insurance notified me that CVS was not the specialty pharmacy I could use, and that I had to use Walgreen Reagence from then on. Through 2019 my copay/deductable was still zero, but I think it was because I had reached the catastrophic limit by then. Now with 2020, I do have a copay. It gets very confusing to talk to insurance, the pharamacy, or even the oral drug specialist/administrator for the oncologist. But I need to make those calls and see if I am elligible for any grants or whatever to reduce the copay. I hope you find a way to bring the cost down. Depending on how you do taxes, you might be able to deduct some medical from taxes. Track everything related to any medical, including dental, eyes, other meds, regular DR, even trips to DR, pharmacy. The deduction is not much, but take it if elligible.
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Simone80 - an ND (not the oncologist) also recommended turkey tail. I eat mushrooms regularly, and use the turkey tail as a supplement. I do not know if it or anything else is helping with SEs from the Ibrance and Arimidex(brand name). My WBC is always down when checked, but the oncologist says it is within acceptable range. The ND also has me taking Jarrow "BoneUp", and a multi "Thorne Basic Nutrients III", and mealtonine. I was already taking, and still do, magnesium, D, Gaia Turmeric-Joint. Hard to know if it just makes expensive urine or helps. Not a lot of good information, just contentious opinions. Some good books, wnere nutrition/lifestyle takes center stage: "Breasts, the Owners Manual", Dr.Kristi Funk; "Anit-Cancer Living, Transform your Life with a mix of Six" Lorenzo Cohen and Allison Jeffries; "Anticancer, a New way of Life" David Servan Schrieber . They all recommend less/no meat, and a plant based diet, some vegies seeming to very healthy and with anticancer properties.
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So my ANC was 580 today, super low for me. I was very surprised. This cycle followed 4 weeks off due to a bad cold and cough, then surgery (lumpectomy). My post surgery number was 4,000 something, almost like before starting treatment, then this dive. I’ve been tired and less active, but eating decently. I did have some bloody mucous when blowing my nose at the end of week 3 but no actual nosebleeds. Sorry if tmi. Has anyone figured out how to predict your ANC? Or have any tips for keeping the count up?
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Great news Jaycee! Good results and a good MO are a good start to the year.
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Rosie-- Your ANC of 580 today, what time in cycle? End of week off or during pills? The lowest point in the cycle is day 15 of the pills.
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Jaycee I am so thrilled for you! Finally someone that actually listens and genuinely cares, and allows you to be part of the process. That is what it is ALL ABOUT!
Makes me wonder about my MO. I think he's pretty great and so far I am happy with him. He def doesn't sit with me for an hour but I do feel he leaves enough time for my questions to get answered. He doesn't soften anything but also keeps everything pretty open-ended and DOES allow me to have say. I feel heard and respected and he seems to value my questions and input. Not my bestie but I respect him and his clinical wisdom and 30+ years of experience. He also was voted one of the TopDocs by his peers this past year. That says a lot about how he affects the people around him, too. He is a kind soul. One MUST be to work in this realm of medicine!
I am doing okay today. Woke up with really sore back, slight temperate and diarrhea. Am taking Naproxen and it knocked me into an immediate nap. Now at work and I just rubbed a bunch of medicated ointment onto my back and gave myself a cupping treatment on my low back. It felt GREAT but pain is still there. It is like any movement backward, forward or sideways and it feels like all my muscles are tightening up.
I spoke with my dad and he was like, "Oh it is the cancer! The doctor said you would eventually feel back pain." And I am fighting that idea like NOOOOOOOOOOOO! It is musculoskeletal. I am in denial!!!!!!!!!!!!!!!!
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Philly- Could it be kidneys, infection or stones?? With pain, temp, and diarrhea. I have had 2 kidney stone attacks and with the first one --before cancer diagnosis-- I had back pain and vomited and had diarrhea.
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