Fox's PDIQ + YOU Conference in Phoenix . . .

[FMundo]

Where were the DBS Manufacturers and what about Duopa (Levodopa pump) at this conference.? Is there therapy after oral medications flame out ? I heard from one person Fox didn't invite them.. Anyone know more? Otherwise, every vendor in the universe seemed to be there. It;s unlikely these companies would boycott the biggest Parkinson's conference of the year. 1,100 attendees . . .

[MBAnderson]

Frank,

"Is there therapy after the medications flameout?"

Have you checked out FUS PTT from the SoniModul clinic in Solothurn, Switzerland?

If not, put focused ultrasound in the HU search window, then go to the focused ultrasound foundation website and Insightec's website.

I think you will find it right up your alley.

Marc

[FMundo in reply to MBAnderson]

Thanks Marc, medications working very well hee. Just curious why these companies weren't out there flogging their solutions at the conference.

[MBAnderson in reply to FMundo]

I'm so glad to hear that. What did you decide to do about N after MJ FF came out with their paper? I quit.

[FMundo in reply to MBAnderson]

Word from my neuro at GU who is associated with trial is that they didn't see results from trial participants until six months . . . (Fox group abandoned theirs at 6 mos.). Meantime, there are trials going on with other TKI's (I suspect that the issue is patent is expiring on Nilotinib) and probably interest from Novartis or others with $$ in mind has diminished.

All I can go is on is my own experience (diminishment of some symptoms, no advance in others (which I would have expected on my trajectory). Of the 75 people in trial only 1 elected not to go on for an additional year on Nilotinib. There were 8 who involuntarily chose not to continue for a second year.... they died.

It will be interesting to see if Fox group bothers to go on and write a report on their trial. One would think that there is a moral obligation there, as their conclusion likely has eliminated any chance of finding funding for any Phase III testing which, by the way, is something GU is keen to do.

My plan is to continue on nilotinib (which I'm getting for free) thru next August. I'll do an eval then as to my overall health. I'll be able to see how many opted to continue on their own coin (which looks like 15K / year with offshore supplier). Sometime its good to be last over the starting line you can see what everybody else did.

The GU Trial report was 80 pages.

[MBAnderson in reply to FMundo]

Thanks for the explanation. Is the GU report available online? I assume the eight who died was due to unrelated reasons or you would've said? I'll keep my supply frozen in case I ever decide to resume.

[jeffreyn in reply to MBAnderson]

healthunlocked.com/parkinso...

[MBAnderson in reply to jeffreyn]

Thank you, thank you.

[FMundo in reply to MBAnderson]

I can send it to you. I'll hunt around for it.

[jeffreyn in reply to FMundo]

IIRC, the MJFF trial report is due this month.

[FMundo in reply to jeffreyn]

I am waiting with baited breath. There is a tendency for tials that fail - no report.

[ladypeanut in reply to FMundo]

Thank you for sharing your experience with the trial. I was wondering why nilotinib was needed. I feel like I am missing something. Also, what symptoms did you have that disappeared and what ones never surfaced for you? My husband, who was diagnosed 11 years ago has been following this therapy and wondering if it is right for him, so your information would be very helpful.

[FMundo in reply to ladypeanut]

All drugs currently available for people provide only symptomatic control of this neurodegenerative disease. Nilotinib is an FDA approved drug for treatment of certain kinds of Leukemia. Using the drug for people (known as "repurposing" it is thought to permit neurons to get rid of misfolded alpha synuclein a protein thereby allowing the neurons to survive . Were this found to be true, this would be the first drug to possibly halt the progression of the disease (not "cure" it). One trial has optimistic results another shows it to be ineffective. Further testing of Tyrosine Kinase Inhibitors (same class of drugs as nilotinib, are underway.

Symptoms improved: Gait, posture and mental state (removal of Apathy). I've stopped using a cane and wheelchair at airport. I walk briskly with the crowd. Honestly, I've also gone through physical therapy and know that I am vulnerable to the placebo effect. Thus I am somewhat skeptical that improvements are the result of taking the drug. However symptom progression seeems to have halted. It is a very difficult call.

[ladypeanut in reply to FMundo]

Thank you for sharing the details with me. I find it to be so very difficult to discern what is best with so many nuances and expressions of the disease and subsequent responses to the multiple therapies. Individuality prevails in sickness and in health, as I have learned through recovering from Hodgkin's Disease. It all comes down to what you feel is best for you and with all of these modalities it takes courage to try them and courage to live with the disease as well. I wish you only the best and will continue to watch for your progress. Take care and thank you again for answering my questions.