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Metastatic breast cancer: Anyone else?
Breast Cancer | Last Active: Mar 12 3:44pm | Replies (213)Comment receiving replies
No, it HAS NOT, AND I AM INTO DAY 13.
THE FIRST DRUG WAS NOT APPROVED, WHICH I CALLED OVER AND OVER TO FIND OUT
ONLY YESTERDAY, FROM SOMEONE, CALLED OLGA; THE DRUG WAS( RIBOCICOIB).
SHE SAID YESTERDAY THEY ARE TRYING TO GET ANOTHER DRUG CALLED (ABEMCICLIB}
I WILL NOT KNOW UNTIL THE END OF THE WEEK. WHY SO LONG?
I AM OVER THE MOON FRUSTRATED; SO MUCH DISCONNECT HERE IN MY CARE.
IT HAS BEEN A YEAR THAT THE PET SCAN FOUND MANY MANY NODULES IN MY LUNGS.
NOW CALLED METASTATIC BREST STAGE 4 .
Replies to "No, it HAS NOT, AND I AM INTO DAY 13. THE FIRST DRUG WAS NOT APPROVED,..."
I’m sorry you’re dealing with this. It’s beyond frustrating.
I too had a delayed diagnosis of MBC because no one could figure out (7 doctors) my shortness of breath and why my one area of my lung was narrowed. Long story short, after a second bronchoscopy, it was a lymph node narrowing and causing the collapse of one of my lungs. I dealt with it for 11 months before they figured it out and that was without treatment. I started on Verzenio and Faslodex (after a week approval process) and within three months my scans showed no evidence of disease. I’m HR + HER 2 -
I understand your anger. I was beyond disappointed and felt completely ignored. I had to fight to get others to understand what I was feeling and that irritated me because it wasn’t anxiety, but it sure did create anxiety after so many months of dealing with many that didn’t move forward correctly.
I was also angry at myself for not demanding a PET scan. I’m an RN and should’ve known better but relied on my team to take care of everything. Well, now I have a great care team and I don’t sit back.
Stay persistent. Keep us posted !
In Canada the program is called My Kisqali Companion, phone number is 1-877-516-5353. Christine.Levasseur@novartis.com
Maybe they can point you to a contact in the US for the program!! 🤞🏻🤞🏻
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So sorry to hear that news! I was on Ribociclab (Kisqali) for 18 months, the company that makes it Novartis have a program here in Canada that will pay for it if insurance won’t. Maybe see if there is similar if you are in US? It is extremely expensive and quite new and that is why insurance hesitates. Mine took a while
To agree to cover it but Novartis sent me
The medication within a few days even though we didn’t know of it would be covered, they said it was important to treat treatment then we would deal with the insurance. Please try reaching out to Novartis! Good luck, keep us posted.