Quote:

(RedPenguin) ..PVNS/Chris is staying in the apartment upstairs from me in Baltimore (we also shared a nurse over the weekend!) tee hee.

Hi Keri, i moved your quote over to your thread, because 1. It belongs here and 2. I'm sick of that other stupid thread..LOL.

I am so happy to hear how well things are going for you....woohoo!!

The Doc's own blurb, says that HiCy will not be a proven cure until patients are shown to be MS free for 10 years, so, I would say that anything stated to the contrary is just a hopeful dream, for now.

Thanks again for your updates and please keep them coming.

Hi Keri,

Nice to see you breeze through something for a change!!

Here's hoping you continue to feel well, and start to get better.

Cherie

Oh, and BTW Keri, could you find out if they have any more trials planned? One small trial with 9 people (under this specific protocol), won't tempt most people into jump on a plane and take the risks/expense. Even if it did, I know my government wouldn't pay for it with this little data.

They have it patented now, so are they out trying to find funding for more trials, ie. instead of looking for money to start treating people right off the bat?

Thanks, Cherie

Cherie - as far as I know, Rush Hospital in Chicago is starting HiCy (or may have already - but don't quote me - as I haven't spoken to anyone - just "heard" this info).

I do believe they have other studies planned - the thing is - it isn't the type of treatment that can easily be done double-blind and placebo controlled. I don't know how they get around that....but then again, as Cheryl calls herself, I'm also just a lab-rat, not the scientist.

I'm not in a trial. As far as I know, rght now there isn't a trial running...they are doing the treatment as "off-label" and insurance companies are paying for it. Of course, I'm sure they will be using all data they get from those of us going through it now.

Also - I know of 4 other people who have gone thru this (well 3 who have, one who goes in tomorrow) other than myself who has had this done since June 30th alone. I have met 3 of those people and spoken via phone to the third. One of them is from Alaska! We are traveling far and wide at this point, but this treatment, the way it is now, isn't accessible to many. It is quite expensive - not the actual medical part as insurance is covering it (I have also been told Medicare in the States is covering it, too)....but living in a foreign city for nearly a month is costly. You also need to have someone stay with you the entire time. So if you or your caregiver works, that is also a loss of income. I am blessed to have people in my life that have been okay to come with me - but at first, I struggled with coordinating all of this! Also I'm blessed that I have a great friend (also one of my caregivers) who is loaning me $ to fund my little research project here. She is my lifesaver. Of course, if HiCy doesn't work, then she is more like my sour gummy bear or something!

So, back to the point - I believe the intent is to have many hospitals offering this treatment.

~Keri

Keri, I am happy you are doing well. I hope you the treatment works for you!

Does anyone know if there is a age limitation for this treatment? That is, are they using it primarily on younger patients without other health conditions that are not attributable to ms?

In the most recent article I've seen the oldest patient was 47. The one before that the oldest patient was 62 and in Douglas Gladstone's Stony Brook study the oldest seems to have been 52.

Additionally, in the paper "Multiple sclerosis: long-term remission after
a high dose of cyclophosphamide" Acta Neurol Scand 2005: 111: 195–198 DOI: 10.1111/j.1600-0404.2005.00340.x the female Brazilian subject who was accidentally overdosed in 1994 was 48.

JH's opinion is the one that counts but it seems that if you're healthy enough to withstand treatment, age doesn't seem to reduce effectiveness of the treatment.

I don't have any firsthand info regarding JH rules addressing age limitation in the open label treatment.

Bob

Hi Bob! Nice to see you here!

Ok, dumb question here. Is this the same treatment as Cytoxin? Or something different?

Is this MY ewizabeth from Chicago? On Tysabri?

NOT a dumb question. Cytoxan/Cyclophosphamide has been around since around 1957 and used many ways on many things, including long term suppression of MS. With that history it's hard to keep things straight.

In it's use as a long term suppressant in MS it didn't provide stellar results and you can find papers to that effect. It's use in AHSCT hasn't provided stellar results, and you can find papers to that effect.

Specific to your question, yes it's Cytoxan, high dose, short term without stem cell replacement.

Bob

Yep, I'm one and the same Bob!

Ok, now I think I understand what it is. Now it's used in conjunction with stem cell replacement. So it's the same med, just used in a different way nowadays.

Anyway, I hope those people taking it will have good results!

It CAN be used with stem cell replacement, but at this point Mark Freedman at the University of Ottawa is the only researcher I'm familiar with who is still pursuing that route.

The Revimmune process at Johns Hopkins if probably the most prominent and is what most people currently are familiar with. It relies on the fact that certain stem cells are resistant to cyclophosphamide and allows your system to regrow a new (naive) immune system on it's own (hopefully) no longer having the "memory" of MS and requiring all the childhood vaccinations again.

Interestingly, with the idea that someone with MS has obviously shown to have the necessary predispositions, and with the thought being that Copaxone's method of action involves myelin decoys for the aberrant immune cells to harmlessly attack, Revimmune is now followed by Copaxone treatment for a limited time with the hope that the experience will give the naive immune system the training needed to respond correctly this time around ie: never again reverting to MS/autoimmunity.

By some people's definition that might be considered a cure despite the fact that next to nothing is definitively known about the MS disease process. Weird huh?

Bob