Seeking Clinical Trial for CBD

[FeelingAlone2]

I can't just watch my dad die. How do I get him on a list for a clinical trial? I don't care where it is. Does anyone have an idea of trials coming up for CBD?

[easterncedar]

I'm so sorry for you and your father. I don't know of any trials, but you aren't really alone. We are here and will listen. Love, Easterncedar

[FeelingAlone2 in reply to easterncedar]

Thank you.

[FeelingAlone2 in reply to easterncedar]

It's nice to know someone cares. The doctors give you a diagnosis and send you on your way. They give up too quickly.

[Hidden]

clinicaltrials.gov/ct2/show...

That was posted on the site about 3 weeks ago, there are a few comments on the post.

Ron

PS not sure the link is working. Go back about 18-19 days looking for a post " clinical trials California".

[FeelingAlone2]

Will do. Thanks!

[enzo501]

Feeling,

MY WIFE AND i ARE CURRENTLY IN A CLINICAL @ UCSF...FOR PSP.There is a 99% chance this won't help her but may help the following generations of people combating this disease.At her stage ..approx 5-6 yrs into this journey it is EXTREMELY rough going w/air-travel ,ground transportation and lodging arrangements ...as most people with these disorders, they find comfort in "their " routines and familiarity. This is a 20 month 22 visit ordeal in our case Denver to SFO....yesterday we did a spinal tap and a 1 day in and out .....a 20 hr journey ...totally exhausting ...and painful for her in a plane seat 3 hrs after the puncture . We have a 5 day trip the middle of Sept.

I am glad she can and so far is willing to participate in this (and was accepted ) .How-ever with love, I want you to evaluate all the phases of where this clinical journey may take you and what YOU as the care taker needs to prepare for before you make that decision . If you can't do what is asked of the Clinical it is all for nothing . They would NOT let us tap the spine here and freeze it ...as they do ..and fly it there . These clinicals are 100% controlled , as they need to be ,and as participants we have ZERO control so if you get the opportunity please take this to heart ...I know how you feel and I wish you the best . jeff and Lor in Denver

[FeelingAlone2 in reply to enzo501]

Thank you for the response. I very much appreciate your honesty.

My mother has been fighting stage 3 lung cancer for 2 years and is finally healthy and clear and able to be with him. With her she did 3 weeks back and forth to Stanford for chemo then 6 weeks of daily radiation at UCLA after a lobectomy.

My parents have been married over 50 years. My dad would rather fight and die trying than give up on her.

How did you and your wife end up finding the trial? Once you found it, how did you go about being enrolled?

[FeelingAlone2 in reply to FeelingAlone2]

Please give your wishes to your wife for me. I will say a prayer for her.

[enzo501 in reply to FeelingAlone2]

There are sites like Cure PSP, UCSF clinicals, Johns Hopkins clinicals ...neurology , and many more ....CALL and talk to the person who initiated the clinical and set dates ...I did that at about 5-6 places (clinicals) and this one called back ...I sent them my wifes 25 yr 300 pg medical history ...most was very normal ..and they got back to me .I have been married 46 yr s and have had an extremely wonderful life ...and like your dad I am in this for the duration ...either hers OR mine .....ask your neurologist about them don't stop till you find and sign up for one if that's what you want .

All the best ....If you want the name of the people in SF e-mail me at [e-mail] ..I can give you names and numbers also check the big drug companies because they are the ones that are sponsoring all of these.Abbvie is the company sponsoring the one were in.

[FeelingAlone2]

Thank you so much. I am out today with my kids but I will email you. I really appreciate the advice and hang in there.

[Christine47]

If you go to the August 2017 issue of Dr. Golbe's blog (psp_blog.org) you will find an update on the status of the current trials.

[FeelingAlone2]

This is great information! Thank you again!

[Donnasue1]

If you are in the U.S the U of Chicago., u of California San Francisco and I am sure others on the E. Coast.

[Donnasue]

Not sure where you live, but the University of California in Los Angeles and SanFrancisco, University of Chicago, Presbyterian St. Luke’s Hospital Chicago And I am sure others are in the works across the U.S,U.KAustralia China and Japan/. Try googling Clinical trials PSB,CBD. And the different web sights should come up. Good luck