New Member, just given my options

garyi said...
I had the DCFPyL PET Scan at the NIH. It was very easy and all the people there are most accommodating. Do give Yolanda a call. They picked up my airfare, but not my motel.

Good luck and Happy Holidays...

ANB said...
Adagio: I noted your 12/22 post regarding NIH. I am in a Clinical Trial ant NIH [NCT02649855]. They did not pay for me to come there for evaluation but they do pay airfare to and from my place of residence. I go to Bethesda from NY or, sometimes NM where I have a second home -- they have agreed both are my "residence" and will pay for either. They have an on-site Travel Agent that does the reservations and it couldn't be easier.

They compensate me $50 for an overnight stay and $8 per meal. They actually mentioned to me that they have someone who comes in from Hawaii.

I found my Clinical trial through web searches. I was unaware that the top research facilities have "patient recruitment". There was an article in the NY Times this past August "A Cancer Conundrum: Too Many Drug Trials, Too Few Patients" https://www.nytimes.com/2017/08/12/health/cancer-drug-trials-encounter-a-problem-too-few-patients.html

I understand that with NIH and other some other places [MD Anderson is often mentioned] you can go there and they will evaluate you and tell you whether they have any clinical trials you qualify for.

Level of care is unbelievable, though they are clear that everything is related to the Clinical Trial and they are not taking over your treatment and not treating unrelated issues. Nonetheless, if it's related to PC you'll certainly get top notch attention to that and continuous evaluation and any testing they think appropriate. "We are not cost driven" as one Nurse said to me.

As I said, I found this trial on my own. Knowing what I know now I would probably contact a few of the top research facilities and ask for patient recruitment. Go there and get evaluated. Then do some research and check in here. One you're in a Clinical Trial you typically can't have other treatment. Of course, you can drop out any time; you are not making any commitment. But obviously you don't want to get started with something unless you're prepared to see it through.

Try to stay positive. Personally, found some of Churchill's speeches inspirational. I have a tee shirt with one of his quotes "if you're going through hell, keep going". My friend told me "stoykie mujic", meaning "standing man" made famous by a two minute scene in in "Bridge of Spies". Inspiring and worth watching just for the cinematic excellence. https://www.youtube.com/watch?v=rRSIPvuYwOY

JNF said...
Generally, with very high risk surgery, is not indicated as it won't be curative and will also require radiation. Radiation after surgery compounds the already significant negative side effects of surgery. As to removing the prostate to relieve the bladder condition, I definitely would want further assessment before deciding. A very bad situation would be surgery, loss of nerves, SRT, bad side effects and then still with a problem bladder. Using EBT, BT, and ADT would be better for cancer control and lower side effects than surgery.