Dream Cruise: I am so sorry I haven't... - Advanced Prostate...

Advanced Prostate Cancer
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Dream Cruise


I am so sorry I haven't posted in a very long time... but I read your posts every day. I experience your ups, downs, sorrows and celebrations with you. My love, prayers and support for you all.. of all cultures and beliefs. 💕

This past year has been a HUGE chapter to our "PSc journey"... not due to doctor's, treatment or rising PSA #'s (thank God) but due to the horrors of insurance companies. OMG! Brian turned 65 last August. Went on Medicare A.... easy peasy. Lost his Teamsters insurance due to turning 65. He went on his current company's insurance and gave all Specialty Ins.,hometown pharmacy and doctors new insurance information. They kept sending his Zytiga through the original insurance company even though they verified it every time and we thought (naively) that they'd successfully moved to his new insurance. NOW we're dealing with a $35,000 bill for Zytiga... until the companies caught up in March 2019. Appeals, etc... Than in August 2019 went on Medicare. Issues from the get go, but tonight was the worst. His Medicare Part D company, "Cigna" denied preapproval for his Zytiga! What the heck? Does anyone have any words of wisdom to help in this dark time? They say it's not medically necessary and suggest he speak with his physician about treatment alternatives! He has Stage IV, T1, M1 PSc... aggressive... I've never been told castration resistant but I assume so. His pathology report showed 12 of 12 cores 5+4. We all know what that means. Why the heck would they NOT approve Zytiga? Any words of wisdom would be appreciated!

Love you all!


PS... That's him in the red shirt reflected in the window (original paint) of his '85 Mustang GT at the Woodward Dream Cruise last weekend. He worked 12 hours parking cars! (And dealing with bikes, skateboards, etc)

13 Replies

Can you catch us up on his history since he started treatment such as when he went on Zytiga, what his PSA history is from start of treatment to now, other treatments, etc. That would help.

Brbnbrn in reply to gregg57

Yes, thanks. Dx in late 2017 with PSA 950. Gleason positive 12 of 12 cores (4+5). By the time they started chemo (Taxotere) PSA was almost 1,600. After 6 weeks went on Zytiga/prednisone, after Casodex, he's also on Lupron and Xgivia. His PSA since chemo is .2. He also takes an array of supplements (learned here) and exercises almost every day. His diet isnt that great as he was raised meat and potatoes and forcing him Mediterranean would kill his optimism! He has increased his veggies, fruit and fish... but not like I'd like of course! But it makes him happy and comfortable.

I've been using Medicare and various companies for pharmacy coverage for the past 18 years.

My impression is that when any of them get a high dollar claim, they deny it. Standard procedure.

So, you appeal the decision to the board of (their) experts and when they look at the facts, they approve the claim. In a case like yours, a jury would surely find in your favor AND award a substantial amount of damages. It's easy to see which alternative they'll choose. Meanwhile, months may have gone by.

My supposition is that in this ensuing time, they have many patients in the same process which means they have a lot of money held back in payments they will ultimately pay anyway. I'm thinking they make a nice chunk of change in interest on that 'pending pay out' money.

Brbnbrn in reply to GranPaSmurf

18 years! Wow! Good job!

Thank you for answering. Also, it was hard understanding the Cigna employees as they're in the Phillipines (not to be rude but it was a real communication barrier). We THINK they said his diagnosis didnt meet medical necessity for Zytiga! I'm wondering if they didn't look at the generic... hard to say. Waiting on the appeal outcome is stressful!

GranPaSmurf in reply to Brbnbrn

Another thing I've learned, dealing with support phone rooms in foreign countries.

"My hearing isn't as good as it once was - I need to be transferred to someone who has English as a FIRST language or be transferred to a US support team"

I think they all have that as an option.

Your doctor should be able to contact the Patient Access Network to see if you qualify for assistance.

Brbnbrn in reply to Magnus1964

Thank you. Didn't know about that. Seems like they would've offered that to us as they know our current situation!

Magnus1964 in reply to Brbnbrn

You could also contact the Jannson which is the company that manufactures Zytiga.

19 years in November. Xandi the last 5 years. I use a specialty pharmacy that helps me to navigate the philanthropic side of the meds. Medicare has covered all but the copays. Have utilized PAN, PAF to cover copays as well as manufacturers sites when the others were temporarily not accepting anymore applications. Usually when more funding becomes available these sites reopen for the specific Cancer.

jfoesq in reply to David20451

19 Years. That's gives many of us lots of hope and something to shoot for. Would you mind telling us your original diagnosis- including age, PSA, Gleason..... and treatments?

I am at 7 years and would be thrilled to make it to 19.

Whimpy-p in reply to jfoesq

Way to go 7!

David20451 in reply to jfoesq

Diagnosed at 55. Gleason 9. PSA about 6. Radical. 5 years later IMRT. Lupron off and on for many years. SBRT (focused beam radiation) to lymph node on the Iliac chain. Zytiga. A second SBRT a year later, same node. Provenge. Been on Xtandi for the last 5 years as a mono treatment. PSA undetectable. Testosterone level is steady at about 225. Life is good.

Ok... so NOW Cigna approved the Zytiga and denied the generic. I'm happy they approved it so he can live... but the copay's are going to drain our life savings! I'm so confused.... I'd think Medicare would automatically go for the generics 1st!?

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