Ibrance (Palbociclib)
Comments
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To Pat Mc THANK YOU THANK YOU THANK YOU for recommending the book Unlocking the Heart of Healing which I am devouring right now. It's biblical, it's it? I also have Radical Remission waiting to be read next. I've read some of Radical Remissions ideas a couple of years ago when I was heavily into alternative therapy. It reinforces so many things. But LOVE is the key. I totally believe that. I had several traumas happen to me when I was a little girl which cause me to go and live inside myself where it was "safe". Trusting has been a issue with me. I've always known this was a problem but never knew what to do about it. Thank You, dear heart. Hugs and Prayers for you
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Aw Snooky, that sounds so rough. Please know I'm thinking of you and praying for you!
Hugs,
Penny
P.S. I came across your post on the bone-only board responding to someone asking for help with depression. It was wise and beautiful. I read it out loud to my husband yesterday.
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After Snooky's posts this may sounds mundane .. but I did want to add more to the discussion of what Pr- might mean.
Since my MBC is de novo and I have no primary my one and only biopsy was of my bone lesion. It came up strongly Er+ but Pr- and HER2-. At the time, my MO said it was "the best possible combination." I was brand new to all of this and didn't know to ask more questions. But after we told friends and relatives (some of whom are nurses) and saw their faces fall, my DH did his usual thing and scoured the Internet for more information. Of course, most of it made it sound like Pr- was not good. But we trust our MO and he persisted.
He finally found reference to a study showing that Pr- is indeed a negative when the treatment is Tamoxifen -- but no significance when the treatment is an AI. That did calm me down. That and noting that a number of the long term posters on this board are also Pr-.
Hope that helps limit some worrying! Lord knows we have enough other things to worry about ...
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holmes13, I'm sorry to hear your blood clot story, and pray for relief for you. That's one of my biggest fears - I lost a cousin to pancreatic cancer last Spring, just two weeks after diagnosis. Terrible leg pain revealed blood clots, which led to the cancer diagnosis.
My father, however, had blood clots (from heart disease) and ended up taking Warfarin for twelve years, with no ill effects. Which blood thinner did they put you on?
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Penny- Thanks so much for the kind words. I had my first treatment today and other than a little nausea late in the afternoon it went great! Hopefully it will end up helping some!!
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Snooky- A second opinion might be useful, with so much going on, and I'd be concerned tamoxifen alone would be enough after all of this?
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Snooky;
I am wondering why they are not removing your breasts? When I was diagnosed I was soooo happy to have the tumour removed and it just seems to me that having your primary removed is a no brainer. Is this not done anymore?
I have had taxol twice. I did lose all my hair but had A/C first so perhaps it was with that although I had taxol with carboplatin the next time and lost my hair again. Who knows but it grows back nicely after. This I/L with thinning is more aggravating to me than outright loss. Taxol isn't bad. During day about 3 to 5 I had pain like severe arthritis and took 2 tylenol 3's (or 4's) every 4 hours during those days and was fine. It worked very well for me and I was in remission for almost 14 years the first time with bc and still ned from ovarian the next. I have lots of confidence in taxol.
Prayers and hugs,
Cathy
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Bumping back to a prior discussion, there is a phase 1 trial for Alisertib (AuroraA kinase inhibitor) with an investigational mTORC1 inhibitor drug- right now only available in Aurora Colorado, but worth keeping an eye on it- right now is for triple negative but another arm for any solid tumors
https://clinicaltrials.gov/ct2/show/NCT02719691
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Bumping back to a prior discussion, there is a phase 1 trial for Alisertib (AuroraA kinase inhibitor) with an investigational mTORC1 inhibitor drug- right now only available in Aurora Colorado, but worth keeping an eye on it- right now is for triple negative but another arm for any solid tumors. Still, unless a lot of ER-positive MBCers decide to sign up, it will take a long time to collect data about whether the drug works well for us
https://clinicaltrials.gov/ct2/show/NCT02719691
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interesting they are trialing two investigational drugs - an AuroraA and an mTORC- without a control arm. Wonder why or maybe they are doing trials on AuroraA with a PIK and/or a CDK first.
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I am getting my Ibrance pills shipped to me by the CVS specialty pharmacy. Is anyone receiving these via Fed Ex? Fed Ex will not deliver to my home and has been leaving packages in an unlocked shed on private property (a lodge) which is accessible to the public if you go past the "no public access" sign. In the past I have been getting the shipments through UPS but just want to make sure. PS: The current temperature has warmed up to 3 degrees. I had packages sitting in the shed last week for 4 days (got no notification they were delivered). I will talk to my contact at the pharmacy to let him know the delivery issues we are having. This is probably a seasonal issue for Fed Ex but the UPS delivery fellow seems happy as always to come to our house.
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Wandering, UPS delivered mine, and someone had to sign for them (however, we love our UPS guy, and he used to sign for us and hide the package in the garage and leave us a note). I think that you can also arrange to have your package delivered to a CVS nearby, if there is one. They lock it up for you, and you can collect at your own convenience. Maybe you can leave it other places, too. I don't recall, since the CVS was a convenient spot for me when I needed to have the medicine delivered when we were out of town and the garage locked!
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Wandering, UPS delivers mine to the house. Don't have to be here or sign. (I'm always here.) I asked my specialty pharmacy if they can do anything about temperature issues (we have 100+ in the Summer) and they said that is up to UPS. I ask for AM delivery and usually get it. Otherwise, no one seems to care about meds and temps. They should.
I went to MO this morning to get latest Pet scan results. There is still one pesky lung nodule acting up slightly. SUV last time went from 1.0 to 1.7. This time, went up to 2.2. Size went from 7 mm to 8 mm over both scans (8 months). We will do nothing med-wise. I'm happy. I'm starting cycle 34 tomorrow. She said doing Faslodex next with Ibrance would be ok with her. We have enjoyable conversations, so different than former MO. She told me she had a teacher in med school who used to say SUV stood for "silly useless values" because he had no faith in them. Interesting. He was a radiology oncologist.
Joyner, I talked to my onc nurse after (got Xgeva shot) and she said she has had several patients on Xeloda for a long time.
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Thanks for the replies. Since we are 50 miles (100 miles round trip) from the nearest pharmacy I'm hoping I don't need to make arrangements in town to pick up the meds. Our UPS guy is really great also but for some reason all of a sudden Fed Ex has started getting involved in our area for package delivery. Most from Amazon - I figure Amazon must have cut a very good deal with Fed Ex so they are using them now. I called Amazon (second time) and told them not to ship to us by Fed Ex. Hopefully they will abide by our wishes. It seems to me if you agree to be a delivery service in rural Montana you should have equipment that will get you around. Leaving packages in an unlocked shed on private property does not strike me as a solution.
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headed in for bone scan this morning to see if it matches up with neck mri which showed progression last week. Not feeling anxious (yet)but just want to get the info of yay or nay so I can move on. Hugs to all this morning!!
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you are in my thoughts this morning Philly
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Good luck, Philly! Thinking of you and sending up prayers for best possible outcome.
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Wishing you all the best, Philly!
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Thinking of you Philly, It will be ok. Force your body to do what your brain tells it. Praying for you (even though you are Jew-bu lol)
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Wandering....Fed Ex delivers mine to my home. They come from my oncology specialty pharmacy.
Hope
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Our Fed Ex guy will not get off the pavement which in Montana does not cover much territory. Don't understand why they don't get vehicles that will move in the snow but they do not - too cheap. Our vehicles are set up to travel in the winter - theirs are not - go figure. I guess they get paid the same if they deliver to our home or drop the packages off. I have requested Amazon to not use them on our orders. Will see if that works.
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Guys I know some of you remember Dianarose from being here for a while. I am sorry to let you ladies know that she passed away yesterday morning. She's no longer in any pain. I'm so sad. And broken. She was a good woman and friend and wife, mother , Baker, creative good person. I will miss her dearly. 💔🌹 fly free sweet sister.
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I'm so sorry Micmel. I know you were very close to her. Yes, she is free.
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That is very sad news about Dianarose. My condolences. I enjoyed reading her posts, they were always very from the heart.
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Thank you Micmel. Those posts are hard to write.
Dianarose was one of the first BCO members who welcomed me.
We commiserated over our constant low platelets. She liked to bake...wasn't she a pastry chef?
What a sad loss. They all are.
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Thank you, Micmel. I remember how close the two of you were. So very sad....
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Fly away Home Dianarose. 😞
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an award winning pastry chef. An amazing woman all around. Always held her faith. Always tried to be upbeat and positive always. I am still in shock honestly. I don’t even know how to form sentences through the tears.
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Micmel - This is so very hard to hear, every day it seems like another angel flies home. Sincere sympathy to you and to her friends and family.
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So sorry about Dianarose. I remember her many posts. Philly thinking about you.0
