Greetings, I haven't posted before, but have been impressed by the courage and care shown by so many of you. I was diagnosed in 2007 (yeah, ten years ago) and had a robotic prostatectomy that November - they almost got it all. Gleason 5+4=9. Since then, I have failed salvage radiation, ADT, Casodex, radiation to the left humerus (incipient fracture), Zytiga+prednisone, Xtandi, and full replacement of the left shoulder. Now the cancer has changed to a soft tissue cancer - I have a number of lumps on my chest wall and in one case biopsy verified prostate cancer. There is a bone met in one rib, which is broken, likely pathological. PSA is at 31 with a doubling time of about 40 days. Good news: genetic analysis of the biopsy disclosed that it displays the MSI-H marker, which means that I can take Keytruda, which is FDA approved for that use. Bad news: Medicare B declines to cover it, they regard it as "experimental". Indeed, so far as I can tell, Keytruda has never been tested >alone< against PCa, only in combination, so their position is not totally irrational. And there seem to no ongoing trials alone either, so it probaby won't change soon.
If I have to pay for it, it's $9600 every three weeks, $166,000 per year, indefinitely. Can't do that.
Can one argue with Medicare? How? Their position does seem to be inconsistent with FDA.
Thanks for any advice!
Written by
gvweller
To view profiles and participate in discussions please or .
I'm not a doctor, but I will offer my opinion. I think Keytruda has long odds for prostate cancer, plus I think you are unlikely to be successful with Medicare covering it.
I don't see that you've done any chemotherapy. The fact that the cancer has moved to soft tissue could be a sign that you've developed some "treatment related" neuroendocrine features. If that's the case, Platinum chemotherapy could be the best option for you. You can have your blood tested for Chromogranin A which is a substance commonly produced by neuroendocrine cancer cells. You can discuss all of this with your doctor. That's my 2 cents.
Like Gregg57, who gave good advice, I'm not a doctor. You mention Keytruda being studied or used alone. Are there studies that include Keytruda and something else that you could join after chemo if necessary?
Check with the PAN foundation 866-316-7263, HealthWell foundation and Amgen safty net foundation 888-762-6436. These people help pay for some medicine you can't afford. You can check their Web sites to get an idea of what they do.
i think the 15th of dec. is the last day to apply for a private supplemental policy...at least that's Humana's last day, not sure about others. call AARP and tell them what you need to have covered and let them assess the best choice for you....that is, IF anyone covers Keytruda. this, i would do first...and start treatment in january. I would fight with Medicare afterwards.
Thanks for the helpful replies, folks. Today I heard from Merck, which is declining the app for financial aid because I am fully covered by Medicare and my AARP policy. The lady at the MedOnc who filed the Medicare app apparently didn't get it right. The Merck guy was going to call them and help. We'll see, here's hoping.
The reason that Medicare will not pay is that it has not been approved for prostate cancer. Keytruda does not work for all cancers, so it will take some successful clinical trials with prostate before it would be covered.
FYI - Keytruda is also known as Pembrolizumab. There are a few trials that are currently recruiting men with advanced prostate cancer using Keytruda. The list of these trials, additional information about these trials and how to sign up for these trials can be found at
I am presently being treated for a Lung melanoma with Keytruda which appears to be effective. When I asked two different Melanoma Oncologist "would it also be beneficial in treating my Pca?" they both said "unfortunately it doesn't." I will be addressing this same question to my Pca Oncologist this coming January and report the response to the group.
My primary medical coverage is through AETNA and my secondary coverage is Medicare.
Each treatment every three weeks (13 so far) is $30,000 and is completely covered (thank goodness!).
Good Luck and Good Health.
j-o-h-n Thursday 12/07/2017 (day of infamy) 11:40 AM EST
PCa is only covered if you have a certain genetic signature. In that case it is covered by Medicare. Many private insurers follow Medicare. Best of luck!
Note that the genetic testing is not on the inherited genes of the patient, but on the mutated genetics of a tumor or "met" in the patient's advanced disease, which shows the right markers.
I am not aware of any such trial. Trials involving all prostate cancers showed that Keytruda only worked for certain genetic signatures, which apparently prompted FDA to act as it did. Trials for all PCa are ongoing.
Until those trials prove that it works on prostate cancer with those specific genetic markers, neither private insurers nor medicare are going to be willing to pay for it.
They just aren't. And it isn't irrational on their part to refrain from doing so.
The cost of the drug is another issue though. But fixing that would require some legislative and regulatory fixes that do not appear to be anywhere on the horizon.
I have a similar beef with Medicare. HIFU was approved for 'prostate ablation' (not prostate cancer) in 2015. I had HIFU surgery in 2016 and had to pay out of pocket -- Medicare hasn't approved or coded it yet. If cryosurgery (the application of cold) is approved for prostate cancer, why in heck would the infinitely more precise (monitored in real time) application of heat (focused ultrasound) not be approved? I suspect the surgery and radiation powers-that-be are resisting a valid therapy in the their own self-interest.
It's already approved by the FDA but Medicare hasn't caught up. How about over 10,000 procedures around the world? Been in use outside the US for 20 years. Is that enough of a 'clinical trial' for you?
Yeah, the head end of the humerus was riddled with PCa, in fact it returned in the same place after maxed out radiation, and it was virtually the only bone met in my whole body. When the shoulder and a big piece of the humerus was replaced, PSA dropped down to about 2. Then went back up, of course, But it bought me a year until Keytruda was found to work for me (Merck now says if Medicare won't cover, they'll fight it, and if they fail, they'll supply the drug!!!)
The soft tissue thing seems to be fairly exceptional. Doesn't involve tendons, etc. Mostly lumps just under the skin. Peace. gvweller
Over on another Forum (HealingWell - Prostate Cancer) Carolyn Spivak's Dear Husband (DH) had a similar positive identification of the MSI-H marker in his biopsied mets, and got approved and started treatment for his advanced prostate cancer with Keytruda in June-July 2017. See:
She is smart as a whip, and I'm sure would be happy to share their Keytruda experience with you either in that Forum, or via her email which she has shared there: carolyn.spivak@gmail.com
Interesting. There appears to be a clinical study somewhere.
If you have a clinical study, and can get a doctor to testify in a Medicare appeal, you may have a fair chance of getting Medicare to approve Keytruda's for use on prostate cancer.
If Medicare approves it, the supplemental will cover it, not just for gvweller but the rest of us as well.
So... Does anyone know where this Keytruda prostate cancer clinical trial is?
Someone says it has FDA approval but is not yet approved by Medicare.
The next step is to get a copy of that approval (for treatment of prostate cancer), the data on it's use to treat prostate cancer, and a Doc to testify by telephone for an administrative appeal.
If there is evidence that it will be an effective treatment for prostate cancer... success by one person in that hearing will make Keytruda available to all of us.
Nameless, you do realize that doing that would require you to to adopt certain unmentionable voting alliances?
And doing so could be done fairly simply. Just a slight change in price discrimination laws... making them applicable to pharmaceuticals and healthcare. Ohhh and permitting Medicare to negotiate drug prices. Either one of these would work, but together they would really really work.
"The people have the power, unfortunately most live sheltered lives and allow others to speak for them." nameless9999
How do you like that Namless. We agree on one thing.
Facts are stubborn things though. Just to make sure we are operating under the same facts:
1. The behavior of the Pharmas are governed by the rules they operate under. Even if you or I were to be made CEO of one of them, we wouldn't alter their behavior... and if we attempted to do so, the company would be taken away from our control.
2. The rules under which the Pharmas operate are controlled by our elected officials. One group of these officials (by and large) attempts to balance fairness and economic efficiency in furtherance of the Constitutional charter to " promote the general Welfare". There is another group who are (by and large) fully committed to the free and full exercise of corporate tangible and intangible property rights and only peripherally interested in the "general Welfare".
3. Now how do you separate these two groups apart? It is not too hard. Here is one way. Use participation in ALEC to identify the elected officials who are acting inimical to your interests, the interests of your family, and the interests of your heirs: en.wikipedia.org/wiki/Ameri...
ALEX sponsors retreats where this second group voluntarily come to learn how to pass legislative language written by large corporations to further their interests. Not the nation's interests. Not our interests. And not your interests. They cover many topics... never once has they ever discussed any legislation to moderate out of control drug prices. Mostly they talk about how to protect the economic or large corporations... the ones with large lobbying budgets available in the form of contributions to legislators who toe the line.
3. Any legislator who attends an ALEC conference is going there with the intention of selling customized laws to industry lobbyists. You can find a list of the more active legislative ALEC members here:
4. Not all Industries are equally active in ALEC... but pretty much anyone who is anyone in the Pharma industry is right there. Including by way or example:
Allergan
AstraZeneca
Bayer
Bristol-Myers Squibb
Eli Lilly
Genentech
PhRMA
Pfizer
They are there primarily to protect their high prices and high margins. They are throwing their money around to purchase laws that benefit their economic interests over your Nameless.
5. If you want to make any progress on your goal, you need to start by removing from office, the politicians at ALEC's feed trough.
The greatest barrier to accomplishing this, is those people you refer to as living "sheltered lives". They just keep electing and re-electing these people... and these bozos continue to do so with vigor, enthusiasm and pride. Funny hah?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
The Vaccines are coming[b] [/b]
Keytruda
Questions about medicare/insurance - turning 65
Anybody try Keytruda for APC 
Question about Medicare Part D Choice
