Ibrance (Palbociclib)
Comments
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Awe Joyner, your mom is adorable! And now I understand why in your original post, it was important for you to say “Shit” - your mom was right: It’s a very effective word!
Jaycee - I didn’t thank you for sharing you eye effects, likely from our drug combos. I hope those new glasses bring back your vision!
CrazeeJane- I have a good feeling about Your next attempt at finding a suitable AI. I’ll be thinking about you as you take that first one on thanksgiving morning.
And here’s a pic of my mom with my sister and me (I am on the left) about a week before she died. She wanted to get dressed up and go out for a nice dinner. You can see from her coloring that her liver was starting to fail but she still wanted a glass of wine! It was a such wonderful night...
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Lauren, what a wonderful photo, to be cherished forever! Your mom was beautiful and had a great smile, even at such a tenuous time. Thanks for sharing!
My mom was 94 in that photo, and her smile was always contagious and mischievous. I'm glad that she didn't live to see my diagnosis of MBC. Her very best friend died of breast cancer at age 36 in 1957. Things were different then, and mom was with her through it all. It would have devastated my mom. Somethings are truly a blessing. She died at 96, shortly before my diagnosis.
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Suzy, here is their website:
I am still waiting for more forms from them. The holiday may be slowing the process down but I just started a few days ago. They have been very responsive.
phone: 855-889-3707
The only thing that really bothers me is their name. "Advocate My Meds." Grammatically cringe-worthy. And I left off the ! they usually use after the name. Just can't do it.
It seems the funding of these very expensive meds has evolved. Pfizer did not expect patients to be taking Ibrance for so long. I am going on three years. And the battle for dollars between the drug companies and the insurance companies has heated up. And the pharmacies are vying for their share. The relationships have become quite incestuous. For instance, my drug insurance company owns my specialty pharmacy. Advocate My Meds (cringe) is a creation of the drug companies. It just bothers me that they hold us hostage, worrying about funds to pay for the drug. That is one thing that really attracted me to this new one. It lasts for a year. Up until now, I would have to start stressing about new funding almost as soon as I got something set up. Just a few months.
I hope this works out for you. Sad that we have to have a plan B. For months now, the foundations have been out of funds. I suspect that if you contacted Pfizer directly (if that is possible), they would send you to Advocate My Meds. (cringe)
BTW, the income requirements are the same as the foundations.
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Joyner - 94 - Wow! My mom made it to 74. My dad was only 65 ☹️
Both of my parents were there for my original diagnosis, but my dad, who was my chemo partner (I had Herceptin for 12 months during and then after regular chemo) died in the middle of it all. The nurses on my chemo floor were almost as devastated l as I was. My gosh that was an awful year! I too am glad neither are here to witness my progression to MBC, but I know both are rooting for me from above!
Love to all,
Lauren
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Lauren & Joyner, what precious photos! Both my mom and dad died at age 88, both with cancer, and died four months from each other. I am thankful they died before my dx but I do miss my saintly dad's prayers. My mom also used "shit" as her only cuss word although somehow she was able to make a regular word sound like a cuss word when needed!
I want to wish everyone a happy thanksgiving full of many blessings!
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I'm on 20 months on Ibrance, next scan is happening tomorrow. Physically I feel fine, emotionally major ups and down. All my fears are centred around my three young children. I simply cannot project into the future because I honestly think I'll get into a place that I'll never get out of. Physically I feel stronger and more energized - even on Ibrance - than at diagnosis - which probably points to the extent of the disease at the time. I'm grateful that the meds were available - I just made the trial cutoff in Canada. I too thought I wouldn't see another year and now my oncologist has told me that he expects at least 3 years on Ibrance (and he's very blunt and more of a glass half empty guy). I try to count my blessings, but sometimes I can't help feeling "singled out" and rail against the unfairness of it all - no one in my family or friends have cancer. We emigrated to Canada 10 years ago, Ibrance might never be available in my home country due to cost. I've always been a worrier and prone to micro-managing my life and now for self-preservation I have to completely go against my nature - live in the moment, accept that I cannot control this, put my trust in other people (doctors) - which are all positive qualities I suppose. Pat, I'm not religious but I find your posts very comforting, and everyone else on this forum thank you for the insight, sharing of knowledge and empathy.
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Must be something in the air. Just today I was feeling overwhelmed with the weight of trying to live normally while carrying this bag of rocks around. I especially have to be careful with DH. If he senses any sadness in me, he falls apart. Thank God for you all and your unwavering support. Am loving the family stories and pictures. My mother's favorite curse was "Goddammit", which she could draw out a good long time. We kids knew to scatter if we heard it...
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hi Jaycee- thanks for the information, but when I checked out the link and search for Ibrance it said they could not find it. Do you have to call to get the coverage.
And thanks for staying on top of this and for your sharing what you know. \
HAPPY THANKSGIVING TO ALL! I AM THANKFUL FOR THIS GROUP OF HONEST, OPTIMISTIC AND CARING WOMEN.
Kitt
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Thank you! I will start trying to navigate this angle on Monday. Their name is weird but, if it helps, that’s all I care about. Thank you for keeping us informed. 😊.
All you wonderful people enjoy your families and friends tomorrow and cherish the memories you’ll be making! 🤗🤗🤗
Suzy
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I posted my thought-provoking and fear-filled post on Tuesday then had to work yesterday. I come back on this thread today, Thanksgiving morning, and see all the conversation that has transpired. I am truly thankful for this site and all you wonderful women !!!!!
I don't feel so alone now. I am not crazy for the thoughts I have. I too am a planner and a control freak, so this diagnosis is hard. I want to know the when and how of the future. Some days, some moments I am going along well, working and just living life. But then the thoughts come. I don't have a 'panic attack' but the heart speeds up and the fear comes on when I think about the uncertain future and the end coming. The what-if's, the 'can I do it', you know.
My mom died at home with hospice and the family around her. She was 80 and died of heart failure. Thank God she died before my diagnosis. But she seemed at peace on that final day and I know God was comforting her until she walked into His arms and He welcomed her into Heaven.
Now... enough of that.
Grannax- Wow !!! From Texas to NYC !!!! Maybe. as someone posted, commercials next????
I hope everyone has a great Thanksgiving Day with family and friends. My family is small but we are getting together this afternoon for a piece of pie and enjoying each others company.
Group Hug
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Candy I'm praying that GOD will help me find the right words for you. Everything that happens to us in life is for our instruction and our growth as mature Christians so we can take this new character with us when we step out of time and into eternity to be with our Lord God Almighty. That's what all of this is leading up to!!!! Death is not the end..it's the beginning. Change your perspective on death. When you talk about planning and wanting to be in control, do you think that perhaps you're trying to do God's job? God said we should decrease so that he can increase. He knows we can't live this life on our own because his perfect Creation has been ruined. God wants you to cast your fears on him, fully trusting that he is able to take care of every problem that we have. Then he wants us to sit aside and watch him work things out. So that we can learn and to trust him more and more. Then he wants you to spread your testimony to all who will listen. Being a planner and in charge of everything that happens to us is not and was never part of the deal. Let that part of you die and run to Jesus for help, wisdom and guidance. You're in my prayers dear Candy. Hugs and Hugs
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Happy Thanksgiving to all, thanks for the tears & giggles. Radiation treatments are done and I start Ibrance Letrozole on the 29th. A bit nervous but know I can find comfort here
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I respect everyone's spiritual beliefs....but amen to you Snooky. Randy it will be okay. Happy Thanksgiving.....love joy and peace to all. We have so much to be thankful for in spite of this disease.0
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Kitt, I just did the search too and didn't find it under either name. They really did say that funds were available for Ibrance when I called the number I listed above. 855-889-3707 Another phone number on the new documents I got yesterday is 877-870-0851 and an email address mailto:membership@advocatemymeds.com
I am not quite as enamored with them as I was at first. I have gotten several duplicate forms and confusing instructions. And I hate the phone. I sent a question by email yesterday and didn't hear back. I know, day before long holiday weekend. I won't rant here and ruin all the wonderful warm and fuzzy posts being made. I'll post the rant I wrote for my sister in the steam room.
Suzy and Kitt, you're welcome. I'm glad you can benefit from the info I find. It's kind of a game to me. I won't let them get me down or defeat me.
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Candy, I am a planner too but knowing God has my eternity is part of the big plan so I trust His plan instead of mine. I am not afraid to die...it is all of the emotions that go with it. But I know My Redeemer has this!
Today I "planned" on getting up and fixing the turkey, but am having one of my dizzy spells instead. So, my plan has changed. My dear sweet DIL and son arrived and instead have prepared the turkey. I am fighting back tears, but watching my 2 grandsons play is helping. God is good.
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I keep stopping by here as an alumnae because you all have such wise words and express feelings I have that I cannot express anywhere else. Blessings to all of you for your insights, wisdom and humor. S*** is my go to word. For years my Irish mother said bloody. It wasn’t until an English friend explained its the equivalent after my mom had gone . I laugh every time I hear the word now. I was trying to explain to a young cousin recently that he should save the words for something important. Kids use expletive deleted as every other word. It sure feels good when I can s###y cancer some days.
Tough few weeks but on the mend. Lots of prednisone,pneumonia but today I made a small dinner. Couldn’t see family but FaceTime is wonderful. Keep on dancing ladies. You are inspiring
PS Iwas on Aromsin for 5 years after a year of hell with Femara. It works differently and I didn’t find it was as bad.
Marie
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I haven’t been on here for a while. In Sept Ibrance and letrazole stopped working. I has various tests to see if my liver tumour r carried the PI3K gene to see if I would quality got the alpelisib trial. That took seven weeks. I do carry the gene but by I am am now too ill for to treated. I am in hospital in Victoria There is pressure to move me to hospice and then palliative home care. I don’t want to die as home but there seems to be no option but private palliative home care. I am scared. I had a psychotic break on hydromomorphine
Thanks to this group for all your support. I will stop posting as my situation just upsets others and I want others to be comforted here I can not longer do that
Hobbes
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Hobbes, my prayers today will be for you. I pray for your comfort and for your peace. I also pray that all the hospital staff treats you and your family with great compassion. Please don't be scared. The God who was there when you were made has not moved. Don't worry about upsetting us. Just let us hold you close to our hearts. I think I've told you of my friend, Margaret Chilton, who went on hospice care at home. I went to see her to say goodbye and she indicated that she wasn't ready to die. When I didn't hear from her family in the next week or so I assumed she had. Nope! She showed up at the door of our support center and said she had decided not to die! She lived well for another year, coming to all our gatherings. Whatever happens to you, Hobbes, we will always consider you to be a part of us. Your spirit will live on whether you're here or in Heaven.
One friend said here this week that she was not religious and I've had those words on my mind. I love knowing that even though we may not be thinking about God at times in our lives, He is always thinking about us. He is not worrying about how religious we are. In fact, when I look back at times I didn't think I was close to God, He was working things out for me in perfect ways. There is a simple little book I recommend to you...Jesus Calling....and you can get it from Amazon. There are inexpensive used ones for just a few dollars. You don't have to be a theologian to find the comfort in its simple words.
https://www.amazon.com/gp/offer-listing/1591451884...=sr_1_3_olp?ie=UTF8&qid=1542925181&sr=8-3&keywords=jesus+callingGod bless all of you on this day when many are feeling the loss of good health and big celebrations. The God of Heaven has a big celebration and perfect health waiting for all of us one day.
Love to you from PatGMc
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Hobbes, I am praying that peace overflows all around you, and your family surrounds you with abundant love. Whatever situation you find yourself in, know that we love you and want only the very best. Thank you for sharing your heart.
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Maire and Hobbes, once a dancer, always a dancer. Please keep us posted as to how you're doing. We will all graduate to another thread at some point, but keep the lamp lit here as a welcome home beacon.
Hobbes, maybe I'm in denial, but I will continue to hope and pray that there is another line of treatment for you. Please post your situation if you feel up to it. We are upbeat, yes, but steely in our support of dear friends. Wrapping you in a blanket of love.
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Hobbes you're in my prayers and always in my heart. Please post whenever you feel like it. You don't overwhelm us we are here for you; here for each other.
Tanya
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Oh, my gosh, Hobbes and Maire, these ladies write so beautifully. I can say nothing better than that I am in agreement with all of their lovely, supportive thoughts. We're all there with you. Hugs my dears...
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Hobbes and Maire, I'm sending the same thoughts to you as the other ladies. I don't post very often but this forum has been so helpful to me. Have been thinking about you since yesterday and hope you have the very best care.
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Dear Hobbes- Please continue to post when you feel up to it. You are not upsetting us. We love you and want to help comfort you in this time.
Thank you for the love that I feel from each of you. We are an amazing group of women ( and men ) !!!!
Jaylea- I love what you said, that this thread, these women, will keep the lamp lit as a welcome-home beacon. This site IS a beacon in the dark where one can find comfort and love.
Marie67- My mom always said "ladies never say s***." But I agree with you. This is a s****y disease and I don't think God will care if I say it - which I have in conversation. If that is the worst cursing I do, I think I am doing ok. And for what we are going through, it fits quite well.
IntoLight and Snooky1954- Thank you, thank you.
Snooky- I am going to PM you.
Group Hug.
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Hobbes;
My prayers and cyberhugs are being sent your way. Please do not stop posting when you're able. I like Pat's post. One never really knows. What about Grannax's Y90? We'll always be here to support you in any way we can.
https://www.sciencedaily.com/releases/2011/03/110328092409.htm
God bless
Cathy
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dear Hobbes,
We all love and support you!! Please don’t stop posting - we are here for you and can handle being by your side through this journey.
I am Jewish by birth and culture and a Daoist/Buddhist at heart - some would call me a JewBu!
Whatever religion, belief you may encompass, the meaning of the words is that there is love coming from each and every one of us to each other.
Much respect to our diversity in culture, religion and individuality as we share love for one another! 💕💕🌈🌈🌈🦋🦋🦋🌈🌈🌈💕💕
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I'm so glad for this forum that supports all in happy and bad moments.
Thank you PatG for your wisdom of fear and your nice Snoopy picture.
Grannax can just agree about the mood swings.Brenda thank for your thread about the cbd. I will look into what sort I will get. Today I talked to my close friend that is onc and she said you go girl, inofficial :-).
And now the bad….
I have had terribles days. Had to go by ambulance to the hospital wednesday evening. My leg cramped and went paralyzed. They did a MR and found metastasis in my brain. Today they did a better scan and found 6 of them. 1 one of was 1.2*1.4*1.5 cm and 5 very small ones that the onk could not see himself. Next week they will, one the konference decide if they going to be able to remove the mets with Gamma Knife or if they have to do something else. I'm one my third round of Ibrance so I cross my fingers that the works in the rest of the body and nothing new will show up..0 -
Yes! I'm all for accepting and respecting people's differences!
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Dear Hobbes...we are here whenever you need us. Sending prayers and hugs. This is part of our life now too. It’s ok for you to tell us what’s in your heart. Wishing you peace and pain relief. And the same to Josalo. We al face our fears here ..love you dancers
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Dear Hobbes, please post on. We're too far away to visit but we can sit around our cyber table and chat, comfort and love. Hugs and peace.
looking to hear from you very soon. J0
