Right to Try Act/Bill

[Lombardi24]

Anyone know how this works, exactly? My oncologist is acting as if its there's way to much red tape for this to work.

[Lombardi24]

You would think that Sloan in NYC would be on the cutting edge of everything...

[Tall_Allen]

righttotry.org/rtt-faq/

There is a lot of documentation. You have to prove that you've exhausted all other therapies and clinical trials. Insurance does not cover it, so it is largely for wealthy people.

[Lombardi24 in reply to Tall_Allen]

Great money + power = life

[ITCandy in reply to Lombardi24]

Different cancer but I often wondered if Steve Jobs had thrown a couple of billion dollars into a cutting edge research facility, if it would have helped him and others. Guess we'll never know.

[Bluebird11 in reply to Lombardi24]

In the 80s one of my professors said.. health is an economic issue. I looked at him as if he had two heads... It didn't sink in at first. Now, I realize the Truth of that statement.

[erjlg3 in reply to Tall_Allen]

:0

[erjlg3 in reply to erjlg3]

That's awful!! Insurance does not cover!

[Fairwind in reply to Tall_Allen]

Yeah, that's the big problem with it..Whatever it is you want to try, the supplier has to provide it free or at low cost and they are under no obligation to do that..It sounds good but in practice it's almost impossible to implement..Even for simple, safe, inexpensive "experimental" treatments like BAT

[ctarleton]

The previously existing federal/FDA Expanded Access (Compassionate Use) program might also be an area to explore. For more information/links, see:

fda.gov/NewsEvents/PublicHe...

Charles

[Lombardi24]

According to oncologist at Sloan if I dont qualify for Lu 177 trial than my only other option is chemo and I dont want to do chemo again. Am still on Lupron but onc wont prescribe any other ADT meds. She says they wont work at this point and with my history I wouldnt qualify under standard of care given that Zytiga failed after a year.

[Lombardi24 in reply to Lombardi24]

They dont do anything outside of prescribed treatments within their med group. No experimental stuff no thinking outside the box. I believe the lynparza if becoming ineffective. My PSA is beginning to rise again.

[cbgjr in reply to Lombardi24]

Bill, I'm sorry that you think your current current treatment is beginning to fail. Are you on Lynparza alone or + Zytiga?

Also disappointed about your opinion on the MO at MSK, as I just had a consultation with her for a second opinion. Although I liked her thoroughness, I did get a hint that she might insist on only following "standard of care" protocols.

CG

[Lombardi24 in reply to cbgjr]

Just lynparza

[Cgjunior in reply to Lombardi24]

astrazeneca.com/media-centr...

[Bluebird11 in reply to cbgjr]

I've seen a change in docs in the last 2 years. They are more afraid of 'standard of care'.. not taking any risks. They appear more and more stressed. Their visits are monitored. Not only that but, they get surveyed by the institution they work in, just as a customer service person would. We get phone or email surveys asking about how well the doctor listened, did we feel we were helped. Was the doctor on time., and MORE. This puts them under pressure.

The control is here and getting worse all the time, even though they have no 'cure'...

[Lombardi24]

Thank you Nalakrats (Alan Stark?)

[gusgold]

I lot of guys had great results with DES 1mg....finding a supplier is a problem

[Bluebird11 in reply to gusgold]

Are you saying DES 1mg a day? Thanks

[Lombardi24]

Thx Gusgold. If it needs a script to obtain my onc will never do it unles it is covered in standard of care.

[Schwah]

You may want to do a paid consult with Prostate oncology specialists in marina Del Rey ca. 3 drs there including mine. All are very good and do nothing but prostate oncology. They are definitely willing to think out of the box but gotta have some logic to it. Not quackery.

Schwah

[Lombardi24 in reply to Schwah]

My doc at sloan is a genitourinary oncologist just not willing to do more than standard of care.

[MontyB]

Hello Lombardi,

Not "right to try", but has your onc mentioned the below trial to you?

clinicaltrials.gov/ct2/show...

It includes an investigational immunotherapy agent combined with naraparib.

My insurance is paying for it, plus the trial helps with expenses such as plane tickets and hotel.

The documentation about it shows that Sloan is recruiting, in addition to many other locations...but I guess that "recruiting" could possibly be for future openings and not current one...but I don't know for sure. Maybe worth checking out..asking about.

Take Care,

Monty

[Lombardi24 in reply to MontyB]

Thx Marty but I dont qualify. I have been taking a PARP inhibitor. Appreciate the info. 👍😊

[Fairwind]

I have been trying to get someone in the Denver area to help me with BAT. It's not as easy as you make it sound..Few doctors are willing to work outside the envelope. Avoiding malpractice claims is top priority and messing with an experimental cancer treatment is something few are interested in..."You have prostate cancer ?? You want me to inject you with a massive dose of testosterone ? Are you crazy ?"

[Gudgelm]

You might try contacting "The Cure Alliance". They are more big picture but are a group of scientists and doctors who advocate getting legislation and systems set up for doctors and others to move quickly on drugs that show promising effective treatment without the long and sometimes unnecessary approvals from insurance companies and the various government bureaucracies. At least they can tell you the status of "Right to Try" in your state.

[Lombardi24 in reply to Gudgelm]

Thx Gudgelm

[Lombardi24]

Thx Joel

[Bluebird11]

Nalakrats... about testosterone. Before doing testosterone does the PSA have to be down to .01 or quite low? I had a friend go to Leiberwitz in LA. He had to do all kinds of drugs including chemo to get his PSA down before he would administer testosterone. He never got down low enough.

[Bluebird11]

Do you think there is enough information on what Dr. Demeade is doing to help us figure out whether it would be a possibility for my husband. And, does anyone know of someone in the SF Bay area. Also, we are in need of an internist who is good with blood tests and open to going outside the box for his general health.

We are looking at the possibility of trying T.