Just FedExed My Records to JH.

A board to discuss Revimmune as a potential therapy for multiple sclerosis

High dose cyclophosphomide

Postby merlin26 » Thu Apr 24, 2008 5:11 pm

I spoke with my neurologist about HiCy and he had told me he had investigated it a few years earlier as a potential treatment for MS. He had performed the HiCy procedure on a total of 5 people. Of the five three had continued to progress, one persons disease has halted but the symptoms are still persistant (based on MRI), and finally the only woman of the group is in complete remission and continues to improve. It's important to keep things in perspective and realize that everyones MS is different. I think HiCy has the potential to be a great treatment for some MS'ers but I hesitate in using the word 'cure' as it relates to it. I'm glad Chris is doing well but this may not be the case for everyone who undergoes the treatment. Until large placebo controllerd studies are done on this treatment i'm going to remain skeptical.
User avatar
merlin26
Family Member
 
Posts: 55
Joined: Thu Dec 09, 2004 3:00 pm

Advertisement

Postby Xenu » Thu Apr 24, 2008 5:23 pm

He had performed the HiCy procedure on a total of 5 people.


Unless he was doing this at Johns Hopkins, he wasn't performing "HiCy" on people. He was just giving them chemo. "HiCy" as performed at JH is an entire package of comprehensive care, including follow-up care. Other trials at other hospitals (including in Stonybrook) yielded different (and not as optimistic) results because the Dr.s performing them were not following the same protocol as the Dr.s at JH.
Xenu
Family Member
 
Posts: 92
Joined: Thu Apr 17, 2008 2:00 pm

Re: High dose cyclophosphomide

Postby pvns2005 » Thu Apr 24, 2008 8:48 pm

merlin26 wrote:Until large placebo controllerd studies are done on this treatment i'm going to remain skeptical.


How in the hell are they going to do a large placebo controlled study with Chemo? Think about what you had just said merlin26. Can you say "UNETHICAL" or "IMMORAL". I agree with Xenu your Neuro is full of it.

Sheesh..
pvns2005
Family Member
 
Posts: 85
Joined: Fri Nov 17, 2006 3:00 pm

HiCy

Postby merlin26 » Thu Apr 24, 2008 10:46 pm

That's my point they can't do a large double blinded placebo controlled study on this treatment. It's unethical and the majority of people would never agree to it due to the enormous amount of strain it puts on the body and the additonal side effects that could manifest themselves post treatment. My point was that unless somehow they manage to do one i'm going to remain skeptical as to it being hailed as a potential cure / everyday treatment for MS. As for my neuro being full of it i'd have to disagree. He's the top neurologist in the Northwest and he runs the Multiple Sclerosis center here in Portland, Oregon. He's also very aware of everything going on in the MS community and has participated in studies outside of our hospital here in Portland, Oregon. One of which being HiCY. Now they may not have followed the same protocol as JH I will grant you that but he has performed the procedure on individuals. No this wasn't just chemo. This was TBI (Total Body Irradiation) with HiCy. Finally the procedure of TBI with HiCy has been conducted in other hospitals in the states not just JH. It's also been conducted at hospitals outside of the states such as New Zealand, Canada, Australia, etc.... It's nothing new and it's been around for years and years. All i'm trying to say is approach everything new and exciting with a moderate amount of skepticism. At least until it's been proven to be safe and work beyond a shadow of a doubt.
User avatar
merlin26
Family Member
 
Posts: 55
Joined: Thu Dec 09, 2004 3:00 pm

Outside US procedures

Postby sandonpoint » Fri Apr 25, 2008 5:02 am

What hospitals in Canada , NZ and AU have had the HiCy protocol ?

Cheers

sandon
User avatar
sandonpoint
Family Member
 
Posts: 26
Joined: Fri Feb 22, 2008 3:00 pm

Postby sandonpoint » Fri Apr 25, 2008 5:06 am

Chris, how is the JH protocol different from the 2006 stony brook ?

Sandon
User avatar
sandonpoint
Family Member
 
Posts: 26
Joined: Fri Feb 22, 2008 3:00 pm

Postby Xenu » Fri Apr 25, 2008 5:38 am

Now they may not have followed the same protocol as JH I will grant you that but he has performed the procedure on individuals. No this wasn't just chemo. This was TBI (Total Body Irradiation) with HiCy.


Merlin, again, if they didn't follow the JH protocol then it wasn't HiCY. Also, you seem to be lacking a basic understanding of what HiCY is, because no one at JH undergoes "full-body irradiation." TBI is not part of the JH HiCY protocol.

Finally the procedure of TBI with HiCy has been conducted in other hospitals in the states not just JH. It's also been conducted at hospitals outside of the states such as New Zealand, Canada, Australia, etc.... It's nothing new and it's been around for years and years.


Actually no, it hasn't. Sure, chemo and radiation therapy have been performed all over the world. But HiCy hasn't. It's a protocol---an entire package of care. Not just chemo and not (as you are suggesting) a combination of "chemo and radiation."
Last edited by Xenu on Fri Apr 25, 2008 5:41 am, edited 1 time in total.
Xenu
Family Member
 
Posts: 92
Joined: Thu Apr 17, 2008 2:00 pm

Postby Xenu » Fri Apr 25, 2008 5:40 am

how is the JH protocol different from the 2006 stony brook ?


Sandon,

My understanding of Stonybrook was that they used another drug in combination with HiCy---a drug which can potentially alter HiCy's effects on the body and/or overall effectiveness. (Chris, I am sure you'll step in and correct me if I am wrong here.)

Also, (again, I repeat) they didn't implement the entire "package" of care. Just blasting someone full of chemo does not HiCY make, kids.
Xenu
Family Member
 
Posts: 92
Joined: Thu Apr 17, 2008 2:00 pm

Postby chrishasms » Fri Apr 25, 2008 5:46 am

I don't know and I don't care really. All I know is from the time I got there till the time I was released 21 days later was the Hicy protocol.

If Christ came back to earth today with nail holes and an army people would still bitch and complain.

If people want to talk about the Phase 3 trial starting shortly with an improved EDSS score of 50% as the endpoint fine. If people want to talk about how insurance companies are already accepting this off label because of the money they are saving on care thats fine too. If we want to talk about how this is working on close to 80 other autoimmune diseases thats fine as well but I am soooooooo done defending this.

I finally feel good for the first time in 25 years. There are others with Severe Refractory MS that are doing wonders with this as well. Show me one other treatment out there that with Copaxone may stop this disease from reactivating again?

My old Neuro is on three national boards, has close to thirty published books and is considered by many to be the head Neuro in the whole Rocky Mountain area. He thought it was crazy too. Thats why he doesn't get to watch me get better.

Nope I am not playing. I saw it with my own eyes, have talked to people who have received this and are getting better, and have been told by the nero's...aka Dr. Hammond and Kerr that I can expect great things.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm

Postby chrishasms » Fri Apr 25, 2008 6:03 am

Folks I've said this 100 times. I firmly believe there is going to be 2 ways to beat this disease within 5 years. Tovaxin and HiCy.

HiCy will be for those who do not make the MRTC's. It will not be fun and it will suck for some of those unluckier ones who need the chemo.

The best thing is it will be done. 2 ways to go. "Mr.Johnson I'm sorry we got to do this the hard way or Mr. Johnson you can chose...."

5-10 years....if your current drugs work take them but if you are slipping down the slope this is perfect for you if you have an active MRI rather than waiting for Tovaxin's approval.

I couldn't wait for the inevitable any more. I am 32 and had a life 4 years ago and wouldn't have had one next year without Hicy.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm

Postby 777 » Fri Apr 25, 2008 6:27 am

what are MRTC's?

Chris I have a question. After you had chemo, how many days were you really sick fromt he treatment? Were you able to go out and do anything or just pretty much going back and forth to the hosp everyday.
777
Family Member
 
Posts: 83
Joined: Sat Mar 01, 2008 3:00 pm

Postby chrishasms » Fri Apr 25, 2008 6:34 am

I was hospitalized from the 13th till the morning of the 17th. I woke up the 18th and felt great.

You are mandated by protocol to go NOWHERE but your living accommodations and the hospital for the 21 days you are receiving treatment.

We sprayed our room down with Lysol and Oust everyday, used hand sanitizer all the time, and I wore a mask everywhere in between the hospital and my room to guard against infection. Make no mistake you need to use every precaution and then some to make sure you don't catch something.

It's all in the blog.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 2:00 pm

Postby pvns2005 » Fri Apr 25, 2008 6:41 am

777 wrote:what are MRTC's?

Chris I have a question. After you had chemo, how many days were you really sick fromt he treatment? Were you able to go out and do anything or just pretty much going back and forth to the hosp everyday.


Visit and read www.chrishadms.com/blog.html . Chris explains everything from start to finish. He has pictures and videos as well.

MRTC's = Mylen Reactive T-Cells. Visit the Tovaxin forum www.thisisms.com/forum-36.html . there you will find everything you need to know about Tovaxin.
pvns2005
Family Member
 
Posts: 85
Joined: Fri Nov 17, 2006 3:00 pm

Postby paulmur » Fri Apr 25, 2008 8:29 am

I am very happy for Chris and whoever else has benefited from this treatment . Revimmune is so far an exciting option. But I don't think your "either go out tortured or go out mercifully" point of view is exactly valid.

Everyone and his brother are now in pursuit of this disease.

Just today, there was an announcement of an ms vaccine that could be available in 5 years
http://www.medicalnewstoday.com/articles/105330.php

Wanna get the real scoop? Look what the money says. Here is a prediction of the MS Market.. it's pretty darn positive


Market Overview
Underserved Multiple Sclerosis Therapy Market Gets a Lifeline with the Development of Numerous Treatment Options

Healthcare companies across all tiers of competition are beginning to sit up and take notice of the U.S. multiple sclerosis (MS) market, following a spate of innovations in therapies. Big pharma, specialty pharma, niche pharma, biotechnology, and start-up companies could soon fill the vacuum created by the lack of an outstanding treatment option. "The pipeline for MS is robust, with a strong mix of early stage and late stage products, offering improved methods of treating and possibly, curing the disease," says the analyst of this research service.

The market is expected to experience a boom between 2007 and 2013 with the launch of oral therapies as well as improved versions of interferons. Innovations will stand market participants in good stead, since healthcare providers are hoping to improve the standard of care and patient compliance. Multiple sclerosis treatment could go through a paradigm change due to the introduction of these therapies, since patients who failed interferon therapy or quit treatment due to side effects will still have an array of options, unlike earlier.

Wide-ranging Therapies in the Pipeline Address Various Types of Multiple Sclerosis

"The pipeline for MS treatments includes a variety of innovative treatment options ranging from oral therapies to vaccine-based treatments," notes the analyst. "While traditional injection-based interferon therapies continue to remain the cornerstone of treatment, the next generation of therapies in development is dominated by oral formulations that cater predominantly to the relapsing remitting type of MS."

The unmet medical needs in primary progressive MS (PPMS) and secondary progressive MS (SPMS) segments are opening up significant market expansion opportunities for participants. Vendors are testing existing products for label expansion into other market segments, while simultaneously working on launching innovative therapies for the same purpose
User avatar
paulmur
Family Member
 
Posts: 52
Joined: Thu Mar 13, 2008 3:00 pm

Postby Jamie » Fri Apr 25, 2008 10:01 am

You see that is the kind of half thought out, knee jerk answer that even the very best neuro's give.

They are an odd bunch but as Dr. Brodsky says there have been so many 'breakthrough's' that have come to naught that the skepticism is healthy.

They could at least bloody read up on it before answering though.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

PreviousNext

Return to Revimmune (cyclophosphamide or cytoxan)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service