A cure - this suggest, there might be...

[ken12491]

Hello - saw this post by 'bbody ' ------ The treatment has been approved form some cancers already here in the US - but is in phase II for prostate cancer ---- looks very promising for some guys like us... In gods name - why can't it be pushed along to possibly help some of us?

Does anyone have any additional news on it? Google and saw none.

Do I have to leave my own country to get the treatment if I was right for me --- or will a BIG Pharma prevent me?

Our President promised to remove these barriers for us....

Ken

healthunlocked.com/api/redi...

[joancarles]

uchicagomedicine.org/forefr...

[gusgold]

These are 2 approved drugs that any MO can use outside of a trial...the only problem would be getting insurance to pay

[alephnull]

Thanks for the post on this clinical trial.

I contacted them this morning and unfortunately I don't qualify on two points.

My PSA isn't high enough yet, but that will change on my next PSA test next month.

Last time mine was 0.09, it must be at least 0.2, my next PSA should put me about 0.25 or so.

My PSADT is too fast, this unfortunately won't change. They are taking only between 5 and 15 months. Mine is 2 months or so.

[charlesmeyers1964 in reply to alephnull]

u know unless u got mets is to low the average male without pca is from 0-4.0

charlie

[alephnull in reply to charlesmeyers1964]

Mets aren't a requirement, just castrate sensitive, PSA>=0.2 and PSADT between 5-15 months.

[Graham49 in reply to alephnull]

Have you tried a plant based diet and supplements to slow down the PSADT? Exercise and reducing body fat may also help. Then you might be able to go on those drugs.

[alephnull in reply to Graham49]

No, but I should. I was a vegetarian for 20+ years and then almost 20 years ago I started eating meat again.

[Graham49 in reply to alephnull]

Vegan or vegan plus fish is usually considered better than vegetarian for PCa. Milk based products and eggs are considered bad for PCa by many experts. However some men seem to do well on grass fed meat and organic eggs.

[TommyTV in reply to Graham49]

I’ve done remarkably well on a standard diet of everything, red meat, eggs, dairy, alcohol, the lot. PSA @ dx 571 currently immeasurable after 7 years. Apart from eating healthy, I personally don’t believe diet much affects the outcome. Stage 4 cancer is terminal, so enjoy life to the full. Alcohol is a testosterone suppressant, so that’s a good start😁.

[ken12491 in reply to TommyTV]

TommyTV -- did u have any treatment at all - RP, RT, ADT? u r stage 4 and 7 yrs out ---wow --- good for u and those around u ---- I had RP, SRT and ADT... G9 regional ... on ADT 9 months was Nair, 2 weeks ago, PSA .19 after no adt for 9 months and my T levels went from 29 to 421!!!! been off ADT for 9 months or so... QOL stunk. wish u the best.. and would love to hear what treatment u had.... keep it up!!!

[JimVanHorn in reply to TommyTV]

I agree with you, yet after the cancer is gone it is easier to have to loose a bunch of weight.

[StayingOptimistic in reply to alephnull]

Alephnull,

I am at .44 psa and PSADT is about 6 months, failed surgery and SRT. do you think I qualify based on your discussion with them please? Thanks

[alephnull in reply to StayingOptimistic]

From what she told me maybe. Are you still castrate sensitive?

If so then probably.

The study is for castrate sensitive patients who at least have a PSA >=0.2 AND PSADT is between 5 and 15 months. Call her, Anna the nurse in charge is very nice.

[StayingOptimistic in reply to alephnull]

Thanks very much, I NEVER had any adt so I am assuming I am but really don’t know what is the definition of castrate sensitive that they go by. Please clarify. Thanks again

[StayingOptimistic in reply to alephnull]

Alephnull,

I just looked online. This trial checkmate 650 is for metastatic castrate resistance PC. am I missing something please? You mentioned castrate sensitive PC.

am I reading this wrong ?

[alephnull in reply to StayingOptimistic]

You are right, Anna the nurse had sent me two additional links. She didn't even talk to me about checkmate.

the two trials are

NCT02614859 PSA minimum >/= 0.2 , PSADT5-15 months T level >50

NCT03315871 PSA minimum >/= 0.8

[StayingOptimistic in reply to alephnull]

Thanks very much, alephnull. I am aware of the second one which I am not qualified for so far but the first trial you mentioned above is not for immunotherapy, may be it was a wrong typo?

Thanks

[StayingOptimistic in reply to alephnull]

Alephnull

Do you have her number and will call her and verify please? I don’t know which number to call

[alephnull in reply to StayingOptimistic]

Anna Couvillon, CRNP

Genitourinary Malignancies Branch

Center for Cancer Research, NCI

10 Center Drive, Room 13N240, MSC 1906

Bethesda, MD 20892-1904

Office: [phone] - - NEW NUMBER

[StayingOptimistic in reply to alephnull]

Thanks a lot. I appreciate it, alephnull

[Kevinski65 in reply to alephnull]

Is this at NIH?

[charlesmeyers1964 in reply to alephnull]

why not drink,relax your not even a 4 which is 0-4 normal unless u got mets or something more serious in your body. u know at this time there is no cure. i would save my meds until u need them. why because they will quit working, your body won't fight the disease any more then new drugs u will be needing. i'm working on my 11 year my psa is 38 not fatal thats a fact and they (docs) said maybe another 5 or longer.

charlie

[ken12491 in reply to charlesmeyers1964]

Incredible --- u r at PSA 38 - not .38 for 11 yrs? Did u have any treatment when it was 1st discovered? That is insane in a great way --- ur logic is right on - save the meds till needed....I'm post SRT 1 yr at fricking .19 PSA ( 9 months was PSA was nadir - T Level was 29 ) now with a 421 T Level - I think its moving again!!!!smile.

It sounds like we have similar views ---- I wish the very, very best 2 u!!!!!!!!!!!!!!! I'll drink to u and me both tonight.... but could u please respond... I have another PSA coming up and am almost wetting myself about -- ( kidding about wetting ) but living from one PSA to the next may not be worth it -- perhaps ur path is better and one that I have certainly consider...

You can see my profile.

[Tall_Allen]

Checkpoint inhibitors (CTLA4 and PD-L1) have had disappointing results for PCa when tried separately. Hopefully, they will work better when used together. Or maybe they will be able to identify a subgroup of men who get a response.

[StayingOptimistic in reply to Tall_Allen]

TA,

I see that checkmate 650 is for castrate resistance PC. Alephnull said it’s for castrate sensitive, am I reading this wrong?

I never had any adt, so not sure if I qualify

Thanks a lot

[Tall_Allen in reply to StayingOptimistic]

If you're talking about Checkmate 650, it says it's for metastatic castration-resistant men only. It also says it's no longer recruiting:

clinicaltrials.gov/ct2/show...

There are several other clinical trials looking at Nivolumab and Ipilimumab

[ken12491 in reply to Tall_Allen]

If the treatment matched my needs and could work - I'd buy a ticket to France.... I would not be denied by anyone or any Gov't for treatment. No one.

[Tall_Allen in reply to ken12491]

Both drugs are available off-label if you can afford it and can find a doctor willing to prescribe it.

[huhnes in reply to ken12491]

Ken12491, you gave me a hard time on another post, yet here you say you'd buy a ticket to France. Buy a ticket to London my friend...I was looking into this 2 weeks ago, the trial is called Neptune and is actively recruiting, but as I posted in another note, the doctor says not to start looking at trials just yet. Good luck!

[ken12491 in reply to huhnes]

Sorry Nuhnes - I really didn't t intend that - we re here to help each other,,,

[huhnes in reply to ken12491]

No worries Ken12491. There is a guy named teddysdad on this group who is in the Neptune program. He has a blog named prostatecancerandbeyond.me. Perhaps you can reach out to him for more information about Neptune. Or try here:

cancerresearchuk.org/about-...

Good luck! Keep us all posted if you pursue it.

[Crabcrushe in reply to ken12491]

He probably posted "taxotere", and his device spelled "taxpayer" .

Happens to me a lot.

Crusher

[charlesmeyers1964]

as for the president care about us i wouldn't bank on him. u didn't mention what treatment unless its the ul-177 its available if its where u live and u have to find where it is available so u need the $$ for it and have the $$$ to go where it is

charlie

[charlesmeyers1964]

where is it available and what is it? the cost?

charlie

[Jdbnord]

sammamish

[larry_dammit]

Cross your fingers ,hope they don’t drag there feet to long on this. Would be nice to have something that actually kills the cancers. 🙏🙏🙏

[charlesmeyers1964]

go to Europe tha'ts the closest for treatment i heard

charlie

[charlesmeyers1964]

went to malecare and all i found was they were talking about proton treatment. will i have no idea what type of cancer u have but with psa below d1.0 maybe thats good for u but guys who have a psa above 30 what does that mean?

charlie

[huhnes]

I was looking in to this too. In the UK, the program is called Neptune. There is in a place in London actively recruiting. Also, there is a "right to try" law out there as I understand. Talk to your oncologist about that, even if not in the study, you may be able to get the drugs. But I don't know that much about it. My doctor said I am too far away yet for clinical trials.

[ken12491 in reply to huhnes]

Hello - can u please fill in your profile so I and other could know why u are ' far too away ' from trials. Would help us. Thanks....

[huhnes in reply to ken12491]

For some reason, I can't seem to do that. I was diagnosed December 2016. Psa at that time over 300 with meta in spine, skull and ribs. 6 doses of taxpayers dropped Psa to 5. Was on bicalumitide, now on Zytiga and prednisone. Psa last check 15 and steady.

BRCA running in family it appears. I was tested, but in Guam where they had to fly DNA to Hawaii for analysis. DNA test came back inconclusive and they are going to do it again.

By far off, I mean in terms of prostate cancer care far off. Which means could be within a couple of years I suppose. For the moment, Zytiga is still working and I haven't been on Xtandi yet.

Hope that clarifies...

[ken12491 in reply to huhnes]

huhnes - who is the taxpayer? - look in the mirror.... u mean if the FDA stands in ur way or anyone else's u would wait? Think again - they have zero interest in u - u do and so does your family and friends...best of luck to u...they took all ur money and look what they did with it ---- a new bill in the house goes into increasing foreign spending to foreign counties who hate us - how about us - 1 in 7 kids goes to sleep at night without food. how about taking that 21 billion and spend it on health care or a wall..

[huhnes in reply to ken12491]

Gee Ken, didn't you save for a rainy day? Angry isn't going to help. I figured the government didn't care 45 years ago. The Neptune program in London is similar to Checkmate 650 here in the states. That's all I'm saying...