Advanced Prostate Cancer
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Medicare and Bone Scans

I’m one of those rare guys who do not produce much in the way of PSA. Even after my diagnosis at Stage 4 three years ago my PSA remained normal. After hormone therapy started, my PSA fell to undetectable and has stayed there. BUT my mets are so far confined strictly to bones, so when my bone specific alkaline phosphatase began to rise three months ago, my oncologist wanted me to repeat the sodium fluoride (F-18) bone scan I had last 9 months ago. There was a big catch, he told me: Medicare no longer covers the F-18 scan. Since my last one, the approval for that scan which was signed by officials during the Obama administration has expired and Trump has not appointed anyone with the authority to renew the approval. This explanation was given to me by a Medicare representative and reaffirmed by every imaging center I contacted. So I had a dilemma. I could either rely on a T-99 scan (much older and more primitive) which Medicare still covers, or pay for the new scan out of pocket. A canvas of imaging sites in my area revealed charges from most ranging from $1600 to $3600—way out of my means. So I elected to have the old T-99, and was partially relieved when the results showed no change in bone mets. Then my MO called to say he’d found an imaging center many miles away that would do the F-18 for $600 and urged me do have if it was possible. So I cancelled a vacation and scrounged and did the preferred scan. The results came back yesterday showing new mets in my rib cage and progression in the already known mets in my spine. That sounds like bad news, but most of you will appreciate that the new imaging gave me perhaps critical month’s head start on new treatment. Thanks to that expensive decision, I’m starting next week on new and promising chemo therapy. I love my life and am grateful for every chance I get to enjoy it. I worry about those of you who might be relying on the old T-99 scan and worry even more about what other life-saving protocols the Trump administration is blocking. For heaven’s sake, people, let’s have compassion.

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You may as I have, had money ripped out of my paycheck since 1965 fro Johnson's Great Society, or what ever you call it. Paid for 40 years--and it just pisses me off--that they will not pay for a Fluoride Scan. And it is not our most sensitive one either. But God works in strange ways---closes one door and then opens a window---Lets Pray the new Chemo Protocol works well, as with your low PSA, you may be dealing with Neuroendrocrine Pca Cells, along with your every day Hormone Sensitive Pca Cells.

Nalakrats

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Thanks, Nalakrats. You’ve sent me off to school myself in Neuroendocrine Pca cells about which I know nothing. i’m Really grateful to this group for sharing information and support. I’ve got a lot to learn.

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Nal,

You got that right...because of foreign wars that enriched corporations and their lakey's in Washington .....Johnson 1 trillion Vietnam and bush 4 trillion iraq the US is now a third word country...I can't even drive my car 20 miles down the freeway without risking front end damage

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Buy an army surplus tank and take Gustave with you when on the road.

Nalakrats

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On the road again ..

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We are proud to be #1 arms dealer to the world... buy Raytheon stock. It’s not going to stop anytime soon.. The machine is up and running.

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Huh? Explain please...

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Don’t know what part of my post needs explaining. This cancer treatment info is stuff I’m learning as I go along. Please respond by letting me know what I wasn’t clear about. We all need to understand this difficult subject as best we can, so I hope we can all help each other out.

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Thank you Reptale. I just buzzed through the posts and got myself confused. I should've reread before posting... I was confused about the "Neuroendocrine Pca cells"! Every time I think I have a handle on something... I see something foreign to me. Thank you for answering and all your posts. :)

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Bill, I apologize if my post came off as a political rant and I am eager to hear your full explanation of why Medicare no longer covers a very effective diagnostic tool. I shared only what I have been told about the coverage by qualified medical and insurance representatives. If there’s more to the story, please add it here. My purposes in posting was to encourage those who can afford it to seek out the most effective scan in spite of the changes in coverage and to encourage all of us whose future depends in part on the decisions of our government agency to be active in ensuring that Medicare offers us the most effective treatment. So please respond with with whatever facts you have that might help all of us.

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I was told by my MO that Medicare no longer pays for the Fluoride 18 scans but pays for the new improved? Axumin test. Not everyone has the equipment and knowledge to utilize the new test, where are you located?

joe

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Thanks, Joe. My MO says the axumin study is great for monitoring mets in soft tissue and I have had one which will be repeated after a year.

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I think the problem you ran into is that the new Axumin scan is only approved for recurrences after prostatectomy (PSA≥ 0.2) or radiation (PSA≥ nadir+2). Because your PSA is undetectable, you are not a candidate for it. NIH has a free clinical trial of DCFPyL for high risk, but you can't be on hormone therapy. It's a pity that NaF is not covered. The fact that the NaF showed bone mets is in some ways a good thing - it means you are not dealing with a rare subtype (like neuroendocrine), and that there's every reason to believe that, since there are multiple bone mets, it will be responsive to docetaxel. Because your type of PC puts out so little PSA, you have to have PET scans to monitor the effectiveness of the therapies you try. Maybe bone alkaline phosphatase will be the only biomarker you can use. I think your doctor may be able to make a case for getting you covered for serial PET scans - you're going to need some in the future.

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Allen, I appreciate the time and knowledge you put into this site. I finished early chemo, now have an undetectable PSA, and am getting ready for radiation on my bone Mets and prostate. RO has me scheduled for an axumin Pet scan tomorrow. When I said this would not show anything with my undectable psa, he disagreed. What am I missing here?

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I don't know. Axumin only gets picked up by metabolically active tumors. Sometimes rapidly growing tumors that don't put out much PSA are metabolically active. But between the ADT and the chemo, I'd be surprised if they weren't quiescent.

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It’s a moot point. Insurance did not approve the axumin scan, said it is experimental for prostate cancer. BCBS Insurance, so they are reputable. Radiology guy at U of Chicago said they have been getting denials by lots of insurance companies.

Still going for the prostate MRI. Wonder if that and the CT scan a few weeks ago is enough to start the radiation on the Mets. I’m also going to drop off some articles on brachytherapy boost for my RO.

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Dr. Almeida at Phoenix Molecular Imaging was an early site for Auximin scans. He claims he devised the early basis for it. And he does Auximin scans and has much experience doing them.

He also does the Carbon-11 Acetate scans. This is not covered by Medicare, but his costs tend to be reasonable.

He is also one of the few places doing trials on PSMA-scan coupled with PSMA-I&T treatment. The scan is allegedly is better than auximin or Carbon-11 Acetate.

But I think you have to be fairly advanced to fit into his trial. You can get the PSMA-scan as well as the related PSMA-I&T for a reasonably low cost in Australia. PSMA apparently can have some nasty side effects for your salivary glands and kidneys. (Losing your salivary glands is no joke)

Dr. Almeida is very good at taking time to explain options and explain results with patients.

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He is very good at self-promotion. The C-11 scan cost him a lot, and he's trying to recoup his investment even though it's now outmoded. The Axumin scan was developed at Emory by David Schuster - Fabio had nothing to do with it (it is available almost everywhere now). His prices are not reasonable - it is all less expensive elsewhere. UCLA charges $2650 for the Ga-68-PSMA scan, which is at cost.

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hmmm - he sure seems personable LOL

He claims the C-11 Acetate is better than Auximin. C-11 choline I heard is the same as C-11 Acetate (I think it is available at Mayo?).

He told me that the problem with C-11 Acetate is that it is non-proprietary and therefore can't support the cost of trials to get full FDA approval. He was talking that he was working for it for other types of cancers.

1. Can you express more detail about your opinion on C-11acetate and C-11 choline? And in what manner is C-11acetate outmoded?

2. If not Almeida, who do you like or recommend generally as a good place to go get a scan. A place that is not wedded to only one type of scan. So they can help you select one.

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I'll say this about him - the one time I met him he seemed like a very charming guy and he dresses very well. Here's a compilation of most of the PET scans and their relative abilities to find metastases. When one scan is BETTER than another, it's not choice you want -- it's the best scan at the lowest price possible. Both C-11 based scans are out of the running.

pcnrv.blogspot.com/2016/12/...

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Allen,

You mention F18-DCFPyL & F18-DCFBC.

I have never heard of them before. Do they have any more common names? Are these basically PSMA scans, with the same issues of salivary and kidney side effects?

Other than cost, why would someone not choose to use one of these scans?

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Those are the only names I know of. When they are approved and marketed, they receive brand and generic names. They are both PSMA-targeted. I haven't heard of any salivary or kidney side effects, although there is some accumulation there - they do not destroy tissue so it is not a problem. I agree - I can't think of any reason other than cost and availability for not having a PSMA-targeted scan.

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Allen

Do you know if either F18-DCFPyL or F18-DCFBC ar available in Europe or Australia?

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I think DCFBC has been dropped in favor of DCFPyL. I'm not aware of any clinical trials of it in Europe or Australia, although there may be some. Why do you ask?

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Dr. Sartor wants me to get a scan. F18-DCFPyL sounds like something I should consider. But I would expect it to be more accessible in Australia or Europe.

Do you know where it is available?

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It was developed at Johns Hopkins. It is only available in clinical trials in the US as far as i know, and each has its own requirements. See the article for links to those clinical trials. The Ga-68-PSMA-11 PET is also available in clinical trials - you might be able to get it in Europe, India or Australia per protocol rather than in clinical trials.

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I received a G68 PSMA PET scan at UCSF. Was in a trial= no cost. MO sent me there. They could of billed me $2650 but didn't. From my experience I think it is very effective in finding tumors too small to be detected by other methods.

Good luck,

Craig

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Thanks so much for your report. I am in the same situation as you are.

Definitely will ask my doctor.

Thank you again.

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Funds will be blocked and services for the poor diminished.. This is a Rebublican Administration after all . Nothing new. Good time to be rich...

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We get the government we deserve.

I have been harassed to no end here whenever I have implied or pointed out what you say Lulu700.

Shameful. I think it was mostly by metastatic veterans who think they are invulnerable to "blocked and services for the poor diminished" so screw everyone else. LOL... what goes around comes around, with interest.

They don't seem to understand that they are among the victims and the prey of Adelson, Koch brothers, Hannity, Rush and all their ilk. Though you would think they should not need to even factor that into their decisionmaking.

Maybe more accurately we get the government that they deserve.

Just one person's opinion.

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Please forgive me , everyone for my political views . We each have our beliefs and political outlooks but neither is important on Healthunlocked. Like minded people think mostly the same politically .. you and I probably . But others think the complete opposite. There is division on most subjects ...... so I should not talk about ;politics ,religion , nutrients, diets , unless it’s been clinically approved by th MDA, FDA. DEA or some other entity that’s supposed to be looking out for the Patients interest.... Left , right, or dead center. Doesn’t really matter with APC which party we belong to . It put us all on the a similar path of survival . Keep our hands on the wheel with PC and our eyes the good things in life. Thanks for reminding me to keep it to myself. Tgif

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No need to apologize for speaking truth

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Had my bone scan....no sign of PC in my bones. Doing a watchful WAITING by getting PSA checks every 3 months for now. We won't have a PET Scan here in my area for another year.PSA 0.29 after 18 years. Post RP.Best Regards to all!!!

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Very good news . Congratulation. Keep up the good work.

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Hey Cesanon, like most Americans , I’ve paid into , social security disability since my first job at 15 ,42 yrs ago. I’ve collected disability for 2yrs now. $1050per month. TG and thanks Uncle Sam. If not for this I’d be hooking on the street corner in order to keep the lights on. I TG that we have these benefits, thanks FDR.. your on your own in most of the world , especially the 3 world countries. A big blow not to work past 53.. Az is a little different . I’m finding out. We’re generally the lowest on education and children living below the poverty line.. mostly due to undocumented folks that can’t recieve help due to their status.. I’ve been in AZ most of my life.. In school it was half and half mex—to gringo. The entire West was all Spanish territory before we bought it.. Guess what? Mexicans were here first. We know the history. There was no border or problems on this border when I was a kid. We’d go with pops camping on the holidays. Never had problems . The Mexicans are generally sweet helpful people. We that live on the SW embrace the Mexican culture. They were here first. Now we have huge retirements communities like sun city . Mostly elderly white republican retirees from the east or mid west. The sway the vote. Kids don’t vote. People over 55 do, in force. Az and all border states have become militarism zones. Beautiful organ pipe national monument skirts our border. No body goes there anymore because there are towers and troops and choppers and check points...It’s like the Berlin Wall. I was in Germany when that fell . A great day.. So now the gringos come and say get the Mexicans out build a wall. It’s all racially charged bullshit.. Mexico and Mexican are our neighbor and loyal allies. What good for US is good for them also. They are not our enemies. Someone must crush the production of meth coming out of Mex. and crush the demand for the most destructive drug ever to hit the streets. A wall,wont stop that.. they use drones and a million other routes. A political rant . Sorry. Mayo Clinic in Az will not accept my Az united health care AHCCCS Medicaid or Medicare.. no way. So my dr moved to Mayo. But I can’t see him. I’m floating with good stats now but without a specialist.. pray I never need one again.. my state card reads on the bottom..Arizona Health “Cost Containment” System .. that means the cheap route and no Mayo naise for me.. If I ever have some costly procedures to do. I ll need to borrow money to go to Thailand or just take what they serve me on the chow line.. staying financially solvent and or earning income is very helpful to living with APC. They say the best things in life are free. I agree! Love, fresh air & water, if we can find it. But we know that the best health care is not free. My dr told me “ don’t lose you insurance. “ cancer treatments are expensive..” he knows he’s at the Mayo now .. Thanks for starting me out Dr. Singh! A wonderful man and APC specialist.. My last rant before I head for the hills for summer. Moved my last diamond back last night. Manana las montanas! Have a good season and good health to you also.

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Hell with discussing politics, why don't we start discussing religion instead?

Good Luck and Good Health.

j-o-h-n Friday 05/18/2018 5:33 PM EDT

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O k , you first...

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Oh God ... Not Again ...lol

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OK, here goes: Q. What were the first words Adam said to Eve?

A. "Stand back, I don't know how big this thing gets".

Good Luck and Good Health.

j-o-h-n Saturday 05/19/2018 11:33 AM EDT

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Jack and Jill . This child’s rhyme applies to me and my wife living alongside with APC or the” pail of water”.. “ Jack and Jill went up the hill to fetch a pail of water .....Jack fell down and broke his crown (that’s me) and Jill came tumbling after “ This children’s rhyme describes my last three years after falling into the APC well. Thanks Louisa May Alcott . The author . My 6th grade education is paying off... Humpty Dumpty is me also. Humpty Dumpty sat on a wall. Humpty Dumpty had a “ Great Fall “ All the kings horses and all the kings men , couldn’t put Humpty Dumpty together again. I consider APC to be my “Great Fall” . I’ll keeping using duct tape, bailing wire or anything else that I need to keep the motor runnin! Sorry , not religion . Just child’s play. These old kids stories hold many wisedoms of life. Jack & Jill , climb together, fall together.. Thanks j-o-h-n. For always bring good cheer ....

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You got it wrong... Jack and jill went up the hill to fetch a pail of water.... jill came down with a two dollar bill... who said they went up for water?

Good Luck and Good Health.

j-o-h-n Saturday 05/19/2018 6:27 PM EDT

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back to the original topic - yes I just found out to my dismay that na f scan not covered anymore - I can't go to places that do psma trials/choline/acetate and none covered by trad medicare.

but about the axumin, found out that it was not fda approved for bones but for soft tissue, and that no studies done related to bones.

when i had my axumin done, I assumed it did perform for bones, so I read the comments in my report - nothing seen in bones in that way, where in reality i think it was just radiologist saying nothing was seen in bones - which makes sense if axumin not designed for or fda approved for bones.

wish I had gotten na f scan then, now psa is too low for any scan but once it rises up, will not be able to sodium flouride due to not covered nor to do axumin again due to it not doing bones, even though it is covered by medicare.

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I understand your bind all too well. I’m just really lucky to have an imaging provider who will do the Sodium Fluoride Scan at an amazingly low price. Calling all the Imaging places near you might help you find one you can afford, and for sure putting some bucks aside if you can while your PSA is low is worth the sacrifice. One thing’s for sure, you won’t get the info your oncologist needs with the T-99.

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