Ibrance (Palbociclib)
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Tanya I love you!!!!
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You tell 'em Tanya!!!!
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Hey folks!
So I am in that interesting space of my MOs office fighting with my insurance, Keystone First, to approve Ibrance for me...for some reason the insurance company is declining the request. I am in my 4th week of the cycle, and should be starting new cycle on Monday...Just the joys of the freaking insurance medical system. WTF!!?? Like why in the heck would an insurance company deny a drug to an MBC'er??
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Philly- I know. Insurance is CRAZY. I was 4 days late once with my Ibrance (several months ago) due to the insurance.
I was denied by insurance for my 3 month CT. The MO had to do a peer to peer phone call with the insurance doc to get it approved. I don't know why it was denied or what the MO had to say to convince them. I am going to ask her at my next appointment. CRAZY. I am MBC, active treatment, and get CT's every 3 months for the last 2 years. If I am stable this time, I wonder if they will balk it again in 3 months. Or how long my MO will want to fight it.
Wanted to ask you Philly. Didn't you mention you were going to do a model thing, like Grannax. Just thought about it and was wondering. Leftfootforward posted on Liver Met Thread about how she was on her local news for an interview. She posted the link so we could see it.
Hope you are doing well. Don't see you posting very often. You are probably busy with life. I am not. LOL.
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Yay Tanya!
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LovefromPhilly, Remind me again what strength Ibrance you take.
Love from PatGMc
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Hi Pat - I take the 100mg currently.
Do you have an extra bottle perchance?
:0) :0) :0)
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Hiya Candy!
You are right! i have been quiet! I am not sure why exactly. I was on a vacation in the mountains with little access to wifi (which was a treat!!) but I am here lurking everyday. I think that sometimes I am not sure what to say in response to things that people post, so I just listen and read.
And yes! I was in a fashion show LOL! Okay I am going to post pics...I hope that the ladies who were in the show do not mind if they are in them...If anyone has any issues with my sharing the photos, please let me know and I will take them down right away.
I am wearing the plaid with the pink earrings here...we are getting a pep talk about the cat walk!
The gorgeous breastcancer.org models!!! I am 2nd from the right in my "matrix" outfit!
Me rocking an "evening wear" outfit and jacket. My adorable dad in the blue shirt behind me cheering us on!
And ALSO - One more publicity stunt...I am featured on the genetics and family page of this site. This just came out...I feel a bit vulnerable with this being out in the WWW but I am hoping it will help others!
https://www.breastcancer.org/symptoms/testing/genetic/relations
You have to scroll down to get to my story...I am the first one!!
(OKAY NOW I AM GOING TO GO HIDE UNDER MY BLANKETS!!!!!!!!!!!!!!!!!!!!)
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lovefromphilly - you look. MARVELOUS! Just gorgeous. Your dad should be proud - cheering you on! Thabks for sharing and I will have to read your story a bit later. (i am at work
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Philly- OH MY GOSH. Don't hide under the blankets. You are wonderful and your family is wonderful. I am glad you had the opportunity to do the fashion show and the interview for BCO. You can help many people by doing this. BTW I love your hair. I have said that before, I think. I love curly hair. Come visit us more often. Love to hear what each of us are doing.
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Philly,
You look gorgeous! Thanks for sharing the pictures. I just watched your video-so cool! It's nice to see all the smiles around your family table.
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thanks everyone! I feel shy sharing the video because it is really intimate! But it was an honor to do and I hope it can help people who are coming to this site looking for answers and/or support and understanding. We get it. Better than anyone!!
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Philly you look great !!! Awesome pics I am glad you posted!!
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Philly the pics are fabulous. I love that you modeled several outfits.
Tanya
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You look marvelous, Philly!
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Philly you look beautiful!
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Thank you for sharing your video. I was originally diagnosed at 47. I also tested negative for a braca gene mutation. My father had prostate cancer many years ago. Last year he was diagnosed with breast cancer and had a mastectomy. He tested negative for any related gene mutations.
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Thank you my friends!!
Dutchiris - isn't that something?! I feel like there is something to this that science and researchers just haven't caught onto. Your father's and your history and negative testing for genetic mutations are really interesting. There IS definitely something to it. How could there not be? I was really shocked to get a negative test result. Were you and your father as well? I seemed to fit the bill so perfectly. I feel some sort of validation from your family's story. And also it is scary. I watched the film with my parents and brother and 11 yr old niece (who we decided didn't need to be in the film for the sake of her age - we will talk with her more when she gets a bit older about testing). I really am happy that the whole process has brought my family into more of an awareness around these issues. Just cause I tested negative doesn't mean that it is not genetic!
How is your dad doing?
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Philly you look awesome! I do think there are additional bc genes and they just haven't found them yet. I was first diagnosed at 40, my sister had bc at 52, and my mother at 80. But yet we all tested negative.
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thanks Simone!
I agree with you - definitely are additional genes.
I can trip out a lot on the “why” off it all.
Thankfully the Lexapro helps me not to get too bananas thinking about it 😝 keeps my Mind from spinning and swirling
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I definitely think there are more genetic causes of breast cancer than have been identified. I was tested a few years ago for some huge number of genes. All came back negative. On my mother's side, there was no cancer. On my father's side, there were many, many instances of cancer. My paternal grandmother died in the 1920s of what they thought at the time was some sort of cancer. At least 3 paternal aunts died of various cancers, some unidentified because of the time at which they were diagnosed. My father had prostrate cancer. Another paternal aunt had breast cancer but not until she was 70 (I was originally diagnosed at 51). My brother died of cancer (though his was probably caused by alcoholism and subsequent cirrhosis.) With all of that history of cancer, how could there not be some sort of genetic component?
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Philly, my dad is doing alright for a 77 y/o. My parents seemed to be taking turns falling down. Then early last spring she missed the last step and broke both feet/ankle. I told them that was enough falling down and mom wins, competition over. Mom gets around well but dad has a harder time.
I had scans yesterday and a biopsy and MO appointment today. I'm told all bone lesion look the same but some show healing. This is the the first mention of a lesion on the poterior aspect of my manubrium. However it was on my initial PET and now shows healing.
There was also traveling involved and of course wait times between thing. I'm tired.
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dutchiris,
That sounds like good news. Stable right?
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Philly, wow look at you! And the others! Pretty inspiring really....
I too have the parent falling down syndrome! 😔.....
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Simone....Yes, it seems stable would apply. I would have liked gone much better but I'm thinking that would not be realistic.
Karen...do we wrap the parents in bubble wrap?
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I have mid 70 year old parents (you can see them in the video!) and my mom has fallen several times. Broke her nose the first time falling on the sidewalk and then tore her rotator cuff muscle falling in their apartment right in front of me!
Ack!!!
It is upsetting! I agree with the bubble wrap suggestion! Lol
Karena I am happy to be part of anything that inspires!! 💕💕💕
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Checking in after a super busy few days. I also have an insurance nightmare. The insurance company cancelled my oncology referral. Yep. Cancelled. Because some imbecile did not verify our insurance change despite it being on their own server. Beyond frustrated at the moment and a screaming headache. Cycle 6 due on 25 October. This is an obscenity that I know many of you have experienced.
Good wishes to everyone.
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movingsoccermom- ugh!! WTF!!??? Seriously deserves the f bomb here!!! Arg!
No wonder you have a headache. Please be sure to drink a LOT of water. I find that helps a lot with the stress headaches I get while on Ibrance.
I just called my MOs office. The nurse, who is okay (not my fav) can be a bit ding-batty. So sometimes I need to be the one pushing her along to remember things - which is annoying. But just now it goes.
I hope you get this insurance thing figured out. I know how frustrating it can be.
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Movingsoccermom and Philly-I hope your insurance issues get settled pronto. It is so frustrating. I worry for those who are too sick to advocate for themselves and have no one else to advocate on their behalf.
I wanted to share some good news. I had my CT and bone scan yesterday. I actually got my results by the end of the day and am still stable after 3 years on Ibrance. I'll join Ciaci starting cycle 40 in a few weeks. I share this because I had not only extensive bone mets but pleural effusion and some small lung mets when I was diagnosed-so it seems that Ibrance can work for 3 years even on people with some organ involvement. Feeling grateful. Ibrance has been relatively easy for me to tolerate and I'm glad to know I have at least another 3 months on it.
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That is great news Chicagoan! Congrats! That Gives us hope that this combo can work for a long time.
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