This Is MS Multiple Sclerosis Community: Knowledge & Support

There have been nearly 200 people treated with this protocol before the license was purchased by Accentia and became the Revimmune study. If you read back on some of our discussions (even in the Tovaxin forum), you will see that it was used at Stony Brook Hospital. The first time I asked if anyone had heard of the Revimmune study was in September of 2007 in the Tovaxin forum and the discussions and info took off from there.

One of the old articles I had saved before the Revimmune study:

Cyclophosphamide

MS treatment 'a miracle'
Rocky Point woman undergoes high-dose regimen at Stony Brook.
Linda Jacobellis had multiple sclerosis, a disease for which there is no cure, for 16 years. Now, she announces, "I no longer have MS." She ascribes her cure, in part, to "a miracle from my mother in heaven." But mostly she credits her recovery to a breakthrough regimen of high-dose chemotherapy at Stony Brook University Hospital."
Doctor Douglas Gladstone, assistant professor of hematology/oncology at Stony Brook, doesn't discount help from above. But he used eight pages in the August edition of the Journal of the American Medical Association's "Archives of Neurology" to describe how his new high-dose chemotherapy treatment has changed MS. Jacobellis's life and the lives of 12 other MS patients who hadn't responded to other treatments.
He's also considerably more circumspect claiming a "cure" for the disease. He describes Mr. Jacobellis's condition in professional terms as "prolonged remission." He relates her current status to cancer patients who have no indication of that disease for five or more years. He notes this new treatment regimen is, "Once in a lifetime. These people should never need another MS medication again."
People with MS have bodies running amok. Their autoimmune system, which is supposed to protect against invading disease, turns against its own central nervous system, according to the Multiple Sclerosis Society's website. White blood cells attack the covering of nerve fibres in the brain, spinal cord and optic nerves. They strip the covering, myelin, from these nerve fibres, leaving scar tissue known as sclerosis, and disrupt the ability of nerves to conduct electrical impulses to and from the brain.
MS symptoms, which can vary from person to person, are terrible. They include: bladder and bowel dysfunction; memory and attention disorders; depression; fatigue; difficulty walking and other balance or coordination problems; pain and vision difficulties, including blindness. Some people can also be afflicted with hearing loss, seizures, speech disorders, and tremours.
There is no cure. Until now, available medication only slows the underlying course of the disease.
For 11 years Ms. Jacobellis suffered from relapsing-remitting MS. She had flare-ups followed by recovery periods. But since 2001 her condition worsened to progressive MS. Her disease wasn't remitting. She was getting steadily sicker.
Her greatest fear: "I thought I'd be a burden." She was afraid she would be wheelchair bound, unable to feed herself, and most important, unable to be part of Andrew, her grandson's, life.
After an MRI of her brain "looked terrible," she related how her neurologist referred her to Dr. Gladstone for treatment. Dr. Gladstone, according to Ms. Jacobellis, suggested she not undertake the course of medication recommended by the neurologist, but instead, "Go for the gusto." Meaning she consider enrolling, if she qualified, in his new treatment study. He was using high-dose chemo to essentially kill off the infected autoimmune system and then replace it with a new, healthy one.
She knew the dangers of taking part in an experimental treatment, but her fear of being further ravaged by the disease outweighed her fear of the treatment going bad.
She said making the decision was "not tough at all. I prayed I qualified."
She did.
Dr. Gladstone and his associates administered a massive, four-day course of the cancer treatment "cyclophosphamide," which killed off all the white blood cells (lymphocytes) as well as "turning off" the rest of her autoimmune system.
She then spent the next two weeks at Stony Brook in a sterile environment while her body healed itself, replacing her white bloods cells and turning the autoimmune system back on.
The result? Ms. Jacobellis reported, "My last MRI showed no new lesions; no new enhancements, and no new activity. I no longer have the MS virus in my body; Dr. Gladstone killed every last T cell in my body. I no longer have MS."
Dr. Gladstone was less effusive but no less encouraged by the results of his study. His paper describes his goal, which was to "stop the disease progression rather than induce disease regression." In other words, the objective wasn't to get patients back to a pre-disease condition, but just to stop the disease from getting any worse.
For most people, not getting any sicker wouldn't be much of a victory. For MS patients, arresting the progression of the disease is almost beyond hope.
The results were better than expected. In the neutral, scientific language of medical research Dr. Gladstone wrote, "After treatment, no patient met study criteria for disease progression. Further 5 (42%) of patients showed a decrease of 1 or greater in their EDSS scores."
For the layman: all of the patients got better. Some got a whole lot better.
Not everyone is as excited by the news as Ms. Jacobellis. MS Society spokesman Dr. Nicholas Larocca characterised the study results as "interesting."
He went on to say that, "It was a small study. Very successful, but one we would want to be repeated with a larger group."
When asked why the MS Society wasn't broadcasting the results as bigger news, he said, "Many things go into this. The use of the high-dose chemotherapy drug Cyclophosphamide has been around a long time and there are lots of different protocols. I can't speak to the extent that this is a unique protocol."
He also pointed out that there was no "control group," a scientific protocol that matches an equal number of patients who do not receive the medicine with those who are being treated. He said without control groups the results assume that people would not have gotten better anyway.
Research oncologists, such as Dr. Gladstone, never use control groups, asking what sort of person with a fatal disease would enroll in a drug trial where there's a fifty/fifty chance of getting a placebo? (A placebo is medicine that looks like the real thing but has no effect on the patient.)
When pressed Dr. Larocca conceded, "In all likelihood this (the results) were not of a spontaneous character." (Meaning the patients got better because of the treatment.)
Ms. Jacobellis, 52, doesn't seem to be very concerned about the MS Society's reaction. Her main concern, she says, is others with multiple sclerosis. She talks with and e-mails hundreds of MS patients and her message is as simple as it is dramatic, "Hang in there! Help is on the way."
She continued, "If they can stop my illness at this point, help for you is right around the corner."
Dr. Gladstone is continuing his trials.
Source: The North Shore Sun © 2006 Times-Review Newspapers

Linda is proof that it works on progressive ms, she's cured..

_________________
Had ms for over 19 years now.

The pulse over time will WILL will make you more at risk for cancer and all the other fun stuff everyone (including doctors) mistake that HiCy will do to you.

HiCy at one high shot like this treatment (Revimmune) is actually tolerated better by the body than using the pulsed method.

Robbie my man,

I will find out if I can give out some emails for some folk at JH who may answer some questions for you. I have no idea if because I am a patient if it's different for me. They may have a completely different email for such questions but I will find out.

Call and ask them why they know the SPMS. Ask to talk to Dr. Hammond if you don't like the answer. If he doesn't make the grade go for Dr. Kerr himself.

I met a guy when I was there in March I thought was SPMS -at least!- so I got no clue what the answer is.

..

Dr. Kerr told us something interesting about the history of this for the auto immune facet of Cyclophosphamide.

It was the late 70's early 80's and it was British COlumbia and Harvard who did this and two different docs. A east coast west coast thing developed. These two guys were like gas and a match and couldn't stand each other. Constant competition. They both claimed the other skewed info and they lost all professional credibility because they couldn't work together. The medical community lost interest.

Dr. Kerr is looking forward to the credit for doing it right lol!

Bob,

Thank you for pointing out that Cyclophosphamide was discussed in 2006 under the General Discussion forum. I never saw that post. Two years ago. Wow. And now finally it is getting some coverage thanks to Chris and the rest of the gang.

Sorry, Another thought... 70's and 80's. If these doctors, researchers, etc would work together, where could this treatment and the people who it would have helped be today? Makes me sad and angry.

Thank you Maggie. I am abou to cry because of where we could be today.

I am looking at the study site today and calling NY and Chicago.