PUT YOURSELF UP HERE

Lyon · Post by **Lyon** » Wed Sep 26, 2007 4:01 pm

HI CHRIS!

The suggestion of this thread was a good idea, although it's a little early so I wouldn't expect too much "bidness" just yet

Bob

chrishasms · Post by **chrishasms** » Fri Sep 28, 2007 8:05 pm

MaggieMae · Post by **MaggieMae** » Mon Oct 01, 2007 5:04 am

Chris,

Glad you started this page. I'm watching (hopefully).

MaggieMae · Post by **MaggieMae** » Wed Oct 03, 2007 7:42 am

Chris,

From what I read you are in the cyclophosphamide study at Stony Brook in New York under Dr. Douglas Gladstone. I found it under clincial trials NCT00296205. But, John Hopkins is doing the Revimmune trial (which is also a high dose cyclophosphamide) under a company called Accentia which purchased the license.

Can you explain the difference.

MaggieMae · Post by **MaggieMae** » Wed Oct 03, 2007 8:26 am

Chris,

I just e-mailed the name given on the government clinical trial web site for the cyclophosphamide study at Stony Brook (same one you gave on the Tovaxin page) and she said that Dr. Gladstone no longer works there and gave me a number to call for Dr. Gladstone. The study is also no longer being conducted at Stony Brook.

Reading back on your past post on the Tovaxin page, I realized (what you meant) when you said that the person you e-mailed gave you a number to call. Do you know what hospital he is affiliated with and where you will be receiving your treatment?

Lyon · Post by **Lyon** » Sat Oct 06, 2007 8:11 am

Hi maggie,
Accentia is the company which bought the rights to high dose cyclophosphamide against the spectrum of autoimmune diseases and named it "Revimmune".

The situation you see looks mixed up from the outside but seems normal for researchers who started collaborating on a project and later go their separate ways, yet continue collaboration on the project.

In searching the internet it seems that Dr Gladstone started at Johns Hopkins (collaborating with HDC) and later went to Stony brook. I thought he was still at Stony brook until you mentioned it and now I notice that his last paper he is listed as being at Hematology Oncology Associates of Western Suffolk http://www.hemoncsuffolk.com/physicians ... one_md.php

In other words, what seems like multiple places working separately with HDC are (seemingly) working together, or at least in association.
Bob

J Neuroimmunol. 2007 Sep 11; [Epub ahead of print]Click here to read Links
High dose cyclophosphamide preferentially targets naïve T (CD45/CD4/RA+) cells in CIDP and MS patients.
Gladstone DE, Golightly MG, Brannagan TH 3rd.

Hematology Oncology Associates of Western Suffolk, 24 East Main Street, Bay Shore, NY 11706, United States.

INTRODUCTION: T cells occupy a central role in MS and CIDP pathogenesis. High dose cyclophosphamide's in-vivo cytotoxic-effect on circulating memory and naïve T cells is unknown. METHOD: Three MS and five CIDP patients received cyclophosphamide (200 mg/kg) for refractory disease. Before and after chemotherapy administration, peripheral blood T-cell subsets were determined. Patients underwent serial neurologic evaluations quarterly. RESULTS: Cyclophosphamide uniformly decreased clinical disease activity. Compared to memory T cells, naïve T cells were preferentially eradicated. DISCUSSION: Cyclophosphamide effectiveness in autoimmune illness may result from Naïve T-cell destruction, as this compartment may be the source of autoreactive lymphocytes.

PMID: 17854912 [PubMed - as supplied by publisher]

MaggieMae · Post by **MaggieMae** » Mon Oct 08, 2007 9:03 am

Thanks for the explanation. I could not understand how Accentia could purchase the license; John Hopkins conduct the study; and Dr. Gladstone continue to administer the HDC. Now I understand.

Lyon · Post by **Lyon** » Mon Oct 08, 2007 11:30 am

That was admittedly a particularly hard situation to follow. If you noticed, Dr Gladstone's resume doesn't mention his time at Stony Brook. I don't know if that was an oversight, whether he left on bad terms or if he hadn't actually been a full staff member at Stony Brook during his time there.

Bob

lgwright · Post by **lgwright** » Thu Oct 11, 2007 10:23 am

How do I get in on this study?

Lyon · Post by **Lyon** » Thu Oct 11, 2007 6:29 pm

Hi Larry,

I was holding off in hopes that we'd hear more information from Chris or Maggie but I'll try contacting Dr Gladstone with his old Stony Brook email address and at the same time I'll see what I can find out from Johns Hopkins.

Maggie mentioned something about a Revimmune clinical trial at Johns Hopkins, but no trials are listed under "revimmune" at the clinical trials site and Johns Hopkins only has scleroderma listed under "high dose cyclophosphamide".

Bob

MaggieMae · Post by **MaggieMae** » Fri Oct 12, 2007 4:50 am

Dr. Gladstone is no longer at Stony Brook. I was given a number (by Stony Brook) to call at his new institution. It is 631-666-6752. I don't think that Dr. Gladstone is under the Revimmune trial. That was part of what confused me. If Accentia bought the rights, how could he continue to administer the HDC to treat MS patients.

Check out the Accentia site for information on Revimmune. From what I read in various articles, it is going to be a multi-center trial. But, there is nothing listed to date under clinical trials. You could either get in touch with John Hopkins (Dr. Douglas Kerr) or Accentia.

Lyon · Post by **Lyon** » Fri Oct 12, 2007 5:19 am

Thanks Maggie, I'll do that.

I tried Dr Gladstone's Stony Brook address but it came back as undeliverable. I got his new email address from his most recent article, but if he is no longer involved in the trial, he will soon be telling me what you just did.

I'll email Dr Kerr just to cover all bases.

Bob

Lyon · Post by **Lyon** » Fri Oct 12, 2007 11:26 am

Dr Gladstone responded so quickly I didn't have a chance to contact anyone at Johns Hopkins.
Bob

The phase II trial is stopped at Stony Brook. But we expect the protocol to be opened in Bay Shore, Long Island within the next 60 days.

My new office contact number is 631 666 6752

doug gladstone

MaggieMae · Post by **MaggieMae** » Mon Oct 15, 2007 4:51 am

My husband is to start Tysabri. He just got his script for an MRI and blood work because that is what is available to him and his doctor thinks it may help to keep him walking (his walking is limited) until something better comes along. I'm so afraid because I have read that some people on Tysabri do worse.

Since Tovaxin isn't an option for him (at this time), I can't help but wonder if we shouldn't be trying to get into the Revimmune Trial or travel to New York to see Dr. Gladstone. This would not be easy for us because of obligations I have to others in our family with health problems. I don't know....