Spheramine

[frank_ger]

Hi,

I am from Germany and I am a new memeber of this message board.

My uncle has advanced PD and I am looking for possible treatments to improve his conditions.

I found a new type of surgery with retinal cells from the eye called Spheramine.

Schering and Titan Pharmaceuticals conducted a phase I study with six patients a few years ago. I learnt that all six patients experienced improvements of their conditions even a few years after the surgery.

A phase II study with 71 patients was finalized a few weeks ago. The first cohort of these patients had the surgery in 2005 and 2006.

Anybody here who have participated in that study and who can speak about the experience made with this new approach to treat Parkinson?

Thanks for your support in advance.

frank_ger

[chasmo]

spheramine recipients here. my dear friend Peggy was on the original study.

We are all on our way to Chicago for a young onset conference, so it might be next week before they can reply.

I left a message on Peggy's anwering machine, telling her about you.

Charlie

[AnnT2]

Go to "Search This Forum" and type in "Spheramine" and you will get a great selection of posts and thread to examine on the topic.

Chasmo: Sure wish I were going to Chicago! Philadelphia is a little sticky most days.

Ann

[aftermathman]

it would be useful if you described your Uncle's situation in more detail, his symptoms, current medication, progression, etc.

This would help someone like Peggy relate the treatment to your situation more accurately. This is important as this board is for people with PD and their family/friends, however historically I have seen investors posing as PWP while looking for information about Spheramine.

Neil.

[pegleg]

Charlie
thanks for the heads up.

I am one of the original six that had Spheramine surgery (now referred to as the STEPS trials). They just finished recruiting the 68 patients needed for Phase II.

Phase I results after 4 years showed an average of 48% improvement over individual baseline results . Here's a link to the actual presentation:

http://www.titanpharm.com/pdf/SpheramineProtocol101_48monthsResults.pdf

After 7 years, I still show benefit from the surgery, which wass only on one side of my brain. I dont know personally how any of the others are doing. I do know that one of the siz had to drop out due to other health problems, not related to Spheramine.

My best testimony is that if I could get my other side done, I'd do it tomorrow.

Peggy :)

[BobT]

Hi I had the spheramine surgery 12-13-06. I know of at least 2 others here also. Phase 2 was complete as of 6-13. Because of the double blind the clock begins ticking now. A year after the last surgery a variety of things wil happen. Data wil be collected and then at some point we presume a presentation to the FDA. Then based on results a decision will be made to start Phase3. If its a go I presume Placebo and the original 6 will be first recruited assuming they still qualify. Strict guidelines can bounce you. I assume this will all take quite a few mos and I would assume the blind would come off then.
As far as the treatment goes. During the study period we cant adjust meds. I was diagnosed in 98. My motor functions while off are zero, tremor mild. When on i'm not suspected of PD. But i take Stalevo 100 6x a day, 1.25 mirapex 3x a day and sinemet 25/100 2x a day. People now often say its nice to see you smile I'm hearing you better and how good I look. I am well medicated but no changes in 2 years. some days i call myself placebo man other days im cured. Only my hairdresser knows for sure. In in one sense i hope its placebo because it can still be better, other days I hope its done. Hope this wasnt too boring BobT

[aftermathman]

I know we need to support Titan investors and I know Peggy that you have communicated with "Peter". I recognise some of the BT2 posters from the Yahoo message board for Titan and the tone of that board is just insulting at times (imho). Also just come clean, don't pretend to have/know someone with PD.

We rely on investors there just needs to be a line in relation to this board.

<Rant over>

Neil.

[BobT]

I hope those comments arent in reference to me

[aftermathman]

you are one of the brave people who help to bring new products to market, whether you invest in Titan or not is non of my business.

My rant was aimed at investors who I recognise from elsewhere pretending to be PWP to gain information.

I am probably too sensitive about this however some of the comments from Titan "investors" issued on other boards I have found offensive.

Hope this clarifies any potential misunderstanding.

Neil.

[BobT]

Thank you, understood

[redbirdwillfly]

Thank you all for your prayers and best wishes. They all produced a good outcome for me on my day, June 13, 2007. I will not know if I got placebo until the milestones talked about by BobT.

That's just about the most I am willing to say at this time. I feel that any research done on PD is so important for our future that I am holding the cards close to my chest, and hoping all the research bears fruit and we get the relief we all so need.

Sometimes I think to myself, Well, does it matter if an investor is evesdropping on us? I don't think anyone would say No Thanks to a big box of money to solve this puzzle. I think Michael J Fox has a job doing just that...heehee. Wouldn't that be cool if Bill Gates stepped in and gave all the money it would take?

Well, enough rambling. Brain surgery is a little easier than I thought. I never thought I would say that. Don't be afraid to join these trials, everyone! It isn't bad - and the doctor's are pretty outstanding. Research seems to have recruited all the "A" students.

God Bless all of you and thank you for supporting me in this chance, no matter the outcome.

Redbird

[BobT]

welcome home

[jeanb]

Best wishes to you! I am so glad to hear you are doing well. :hug:

[pegleg]

Hi Redbird. I am glad that you had a good outcome. Charlie and I did see each other at the conference. that was my firsit NPF YOPN (young onset Parkinson's network), and I really enjoyed it.

I had a rough time, because I fractured my foot so had to stay in a wheelchair for most of the time. And to add fuel to the fire, I went off terribly during my presentation. I will leave the evaluation as to whether it was effective or not to Charlie.

Bob, glad to see you here, also. God answers prayers!
Peg