11 years ago I had a mastectomy on my right breast, and followed up with 7 weeks of radiation. All was well...then in May I was short of breath and my primary Doctor said it was COPD? Well I questioned that and demanded a lung xray. That is when involvement in a lymph node was found, and then after many tests, MRI, cat scans etc. it was discovered in my chest wall on the mastectomy side. Doctor said only happens in 1% of population. Lucky me.
Then the nightmare began with my Insurance company. I have Regence as a supplement to my Medicare. The Tumor Board at the cancer center recommended I start treatment with Kisqali as my prognosis was I had 1 year without treatment and 2-4 with. Kisqali has a median overall survival rate of 58.7 months, but it was rejected by Regence and I was told I had to try Ibrance with an overall survival rate of 34.8 mo. The co-pay for me was $5,890 a month!! So I spent 2.5 months seeking help for the co-pay, and finally started on Ibrance capsulesat 125mg with Faslodex injections . After 17 days I had mouth sores, my white count plummeted and I had a terrible dry cough. Dr. Stopped my treatment for 2 weeks and I am to begin again next Wed. Sept. 29th. with Ibrance at 100mg.
My questions...Has anyone tried Kisqali, have you had issues with your Insurance companies over ridding Doctors , and has anyone else had chest wall metastasis that was inoperable, and told 2-4 years with treatment? I guess I am just not accepting a timeline for my death , but would really like to hear if anyone has actually beat this!!! Sorry for the rambling. I am still in shock,and so upset that I have to waste energy on fighting with Insurance companies, instead of fighting for my life.!!!
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Misspositiveattitude
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Hi just wanted to respond . I dont feel an insurance company should be able to over ride a doctor. That being said please don't take those survival rate numbers to seriously. Just as everyone re acts differently to every treatment so to they have blown those survival rates out of the water. Stress is the worst thing for anyone and for sure for us with cancer. Since we can't fight the system go with what your doctor is prescribing everyone seems to have problems at the beginning of a treatment until the kinks are worked out for there particular body. Try to relax go with the flow and I think you will start feeling better. Just consider this treatment as another stepping stone . Once you run its course then maybe your insurance company will approve the Kisquali. But the most important thing now is to destress . I'm praying for everyone here . Take Care
Hi there. Have you ever worked with a Medicare broker to make sure that you have the right packaging of all the "parts?"
As I am moving into the advocacy space within the MBC community, I recently attended a legal clinic for folks with MBC and found out about this for the first time. There are a lot of "parts" of Medicare beyond what most people know about, and, especially as relates to cancer treatment meds, you should look into this. It is free, as it is actually paid for through Medicare.
I have a phone number/name of a broker that is recommended by the MBC advocate/attorney who has become a friend on top of everything else. Send me a private email if you want that info. I think it will be worth it to you to chat with this person.
Thanks Mary. Sounds like a great idea....I would love to contact someone. It has really been discouraging dealing with Insurance. I honestly dont know how to send you my email privately.?..
I will send you a private message. As for talking to someone about this, I had no idea there was such an option that might make a difference for women (and men) with MBC ... who are on Medicare... when it comes to affording meds. You'll end up getting a notification that I have emailed you through this system. Will dig up the info now and you will hear from me momentarily.
Cos, that is great to know. Not having problems at the moment. I got my Ibrance free from Pfizer, after the oncology nurse practitioner helped me fill out "patient assistance form." Pfizer cancelled me once and sent me instead to a nonprofit that helps subsidize cancer treatments, but the oncology nurse practitioner made one call to Pfizer and got me back on the free program.
I guess I should be saying some of this to Misspositive...
As I wrote MaryCos below, I got Ibrance free from Pfizer from their Patient Assistance Program. There is an application form. My oncology practice's nurse practitioner helped me through this and made sure I got it.
Then when Ibrance failed after two years, my oncologist put me in a clinical trial. Everything is now free! My scans, blood tests, even dental work that was related to treatment. Kisquali is perhaps too well established for clinical trial, but perhaps another pharmaceutical is developing a version of it. Make sure it is not in first stage, though. You don't want to get placebo.
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, but would really like to hear if anyone has actually beat this!!! Sorry for the rambling. I am still in shock,and so upset that I have to waste energy on fighting with Insurance companies, instead of fighting for my life.!!! 
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