Kisqali and Insurance Company - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,548 members8,104 posts

Kisqali and Insurance Company

Misspositiveattitude profile image

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.!!!

Written by
Misspositiveattitude profile image
Misspositiveattitude
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Justme153 profile image
Justme153

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

Misspositiveattitude profile image
Misspositiveattitude in reply to Justme153

Thank you....I needed that response♥️🙏

mariootsi profile image
mariootsi

I have chest wall metastasis too. Really 1%! Boy, aren't we lucky!

MaryCos profile image
MaryCos

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.

Cos

Misspositiveattitude profile image
Misspositiveattitude in reply to MaryCos

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.?..

MaryCos profile image
MaryCos in reply to Misspositiveattitude

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.

Misspositiveattitude profile image
Misspositiveattitude in reply to MaryCos

Perfect. Thanks so much

MaryCos profile image
MaryCos in reply to Misspositiveattitude

Let me know if you can't find my message to you. I'll try to help you figure that out. But, the message is waiting for you.

MaryCos profile image
MaryCos in reply to MaryCos

Hint: Look at your profile page.

TammyCross profile image
TammyCross in reply to MaryCos

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...

TammyCross profile image
TammyCross

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.

You may also like...

NED with Kisqali

clots than Ibrance and I had had a blood clot in each leg while in the rehab hospital. I also had...

After 12 rounds of Kisqali I remain NED

My CA 27-29 tumor marker had risen two months ago by about 25 points. It has since come back down...

Kisqali and Fulvestrant

I am on a combination of kisqali (3 weeks on and one week off) and fulvestrant injections. Just...

Kisqali and skin rash

Anyone get hot itchy skin and rash from Kisqali? I’m on cycle 3. 400mg. Been itchy for a few days....

Adding Kisqali to Letrozale treatment

suggested to me to add Kisqali to my treatment of Letrozole. I am \\"cancer free\\" since I had a...