EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Mar 02, 2008 Posts: 83 Location: Lake Bodom, Finland
Posted: Sat May 10, 2008 5:02 pm Post subject:
Thats cool they are going to start doing that in Denver, I might wait. I am from Denver but living in Dallas right now. Probably moving back soon though.
I am torn because I am afraid if I wait too long I will slip into SPMS and I want the best chance possible to keep living a "normal" life. Lots of thinking to do.
If you are in control and no deficits then it's a harder decision to make.
For the people who do decide to do this I bet it's really not that hard a decision at all.
If you are sliding downhill and agonising about this then, well....... *i've been stuck about what to write here but it all sounds either patronising or aggressive so I'll quit while I'm behind*...
but DON'T let people tell you there is a 3-7% risk of death.
I'll be challenging everyone online who says that. I have the data, they have rumours and hearsay.
p.s.
blog is updated now with a special snazzy index page!
Joined: Sep 24, 2004 Posts: 368 Location: Washington USA
Posted: Sun May 11, 2008 12:23 pm Post subject:
Chris, I am confused.
This is a stage III trial in which they are looking fo prove efficacy in MS with this protocol and they are doing it at JH.
But in another thread I also read that some insurance comanies are covering it which suggests post trial availability and JH is treating some people outside of the trial? While the trial is going on also?
Now you mention also "Denver", is this another trial center or a hospital which will offer the protocol? Do you know which hospital so a person can call?
ANd finally are you aware of it being offered to other institutions, for example, if I went to the University of Washington MS clinic, which has done studies on autologous stem cell transplants (I understand it is different but I offer them as contenders since they are familiar with the delicate lymphopenic phase) and asked them to consider adding this treatment, is it available for them to use the protocol? Would JH give them the information they need to apply it or would they need to be invited to participate in the study itself??
JH and Dr. Brodsky have the history, know how and rights to this proceedure. ABPI has liscensed this from JH and called it Revimmune. JH and ABPI are trying to bring this to the mainstream by doing a
phase III study to show statistically the benefits from the proceedure. They are still getting insurance companies to pay for this by showing them the current statistics of past patients and the cost benefit to them to give this a shot. For me it was not a hard sell to BC/BS. I was on Tysabri to the tune of $48K per year along with other meds. The HiCy treatment in the end for the proceedure itself with all the follow up MRIs will probably be around $40K. They will get their investment back in less than a year and if it works then they are seriously in the black going forward. They at least make their investment back in less than a year. It is a good trade off for them.
JH will be setting up different centers around the country to perform the proceedure and I would be willing to bet that these areas will be the centers of treatment in the future if the FDA gives it the ok. If they don't they will most likely keep performing the treatment in Baltimore. You have to remember they are doing this for other autoimmune diseases other than MS and they have had great success. I don't see any other Hospitals just giving this a shot. It might seem very straight forward at JH but they have a lot of History that was developed over a few years.
Joined: May 04, 2006 Posts: 3134 Location: Mid-Michigan
Posted: Mon May 12, 2008 3:01 pm Post subject:
HiCy wrote:
You have to remember they are doing this for other autoimmune diseases other than MS and they have had great success.
Hi Brett,
So that I understand, are you saying that JH willing to treat people with Revimmune for other autoimmune diseases right now, or that they have in the past?
My younger brother has Crohn's and good health insurance, and considering the costs of his ongoing treatments, there is no doubt that the insurance company would quickly recoup their costs for the Revimmune.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
I would pose this question to Dr. Brodsky. I really don't see why not. They might think positively about the idea. They have a lot of faith in this process. If you read the Revimmune press releases they are looking to address all the autoimmune diseases with this protocol.
Joined: May 04, 2006 Posts: 3134 Location: Mid-Michigan
Posted: Tue May 13, 2008 2:11 pm Post subject:
Thanks Brett,
I've talked with my brother about it before, but I suppose before asking Dr Brodsky, I should find out if my brother would actually be willing to step up to the plate.
Not long after he was diagnosed with Crohn's in 2002 he was so desperate that he, in all honesty, was trying to find a pig farm infested with T suis and he was going to eat pig shit. That's desperate considering that I hold my breath when I drive past a pig farm.
Now that he's had a few years to adjust to desperation being a way of life I get the idea that he's adjusted to his "new normal" and I'd better make sure that he's still got enough sense left to realize that going above and beyond for a short period is small price to pay in order to leave misery behind.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3134 Location: Mid-Michigan
Posted: Tue May 13, 2008 8:16 pm Post subject:
HiCy wrote:
Has you brother tried Tysabri? What meds is he on?
Hi HyCy,
After that last response it came to mind that even if JH were to agree to treat Crohn's patients, past treatments would be the archille's heel in my brother's situation.
He's been on Remicade (infliximab) infusions and Imuran and JH would sensibly require a period of time to clear those drugs from his system.
That's basically what kept him from being able to participate in the last University of Iowa T suis/crohn's clinical trial......right or wrong, he's convinced he can't make it without treatment for the time period necessary to clear Remicade and Imuran from his system _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Apr 27, 2008 Posts: 66 Location: Los Angeles, CA
Posted: Tue May 13, 2008 11:28 pm Post subject: Waiting/Wash-out period
Hi Bob,
I'm currently on Tysabri and waiting to have the HiCy - and I've been told the wash out period is only 4 weeks. Okay, so "only" is relative...I don't know how often your brother currently has treatment...but 4 weeks in possible agony/desperation is "piss in the bucket" when you think about the long-term benefits that HiCy might have for him??
Okay - so I have NEVER used the term "piss in a bucket" and have NO idea where that came from! Must be from one of the holes in my brain!
Joined: May 04, 2006 Posts: 3134 Location: Mid-Michigan
Posted: Wed May 14, 2008 1:37 pm Post subject: Re: Waiting/Wash-out period
RedPenguins wrote:
Okay - so I have NEVER used the term "piss in a bucket" and have NO idea where that came from! Must be from one of the
I've never heard that term, but I kind of like it! I guess "one drop of piss in a bucket" would signify how trivial something is, and I can see the 4 week wash out period fitting the description!
You talked me into it! It won't hurt for me to at least ask my brother whether or not he would remotely consider something like Revimmune.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Us Brits would use "piece of piss" to describe something trivial or easy. Though I kinda like the term "piss in a bucket" especially since I've recently discovered that I piss myself every time I sneeze.
I guess going for Revimmune is a big decision especially when its still in trials.
Oh, and hello to everyone - I just joined last night. I'm Cyclops.
Joined: May 04, 2006 Posts: 3134 Location: Mid-Michigan
Posted: Wed May 14, 2008 2:40 pm Post subject:
Cyclops wrote:
Oh, and hello to everyone - I just joined last night. I'm Cyclops.
Hi Cyclops, welcome to the site!
Cyclops wrote:
I guess going for Revimmune is a big decision especially when its still in trials.
That's a pretty accurate statement. Regardless of how easy or hard someone finds the decision, it's a big decision.
One of the worst things about an MS diagnosis is that it separates you from the comfort of the huddled masses who usually don't have to face life altering decisions and are able to just accept the default, which is to grow old gracefully and eventually succumb to the normal infirmities of old age as been happening for millions of years. People with MS have to decide on a treatment option or decide not to treat, with it in mind that they are have to spend the rest of their lives living with the results and maybe kicking themselves in the ass, despite there not being any clear cut "right" answers.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Mar 02, 2008 Posts: 83 Location: Lake Bodom, Finland
Posted: Wed May 14, 2008 2:48 pm Post subject:
Lyon wrote:
Cyclops wrote:
Oh, and hello to everyone - I just joined last night. I'm Cyclops.
Hi Cyclops, welcome to the site!
Cyclops wrote:
I guess going for Revimmune is a big decision especially when its still in trials.
That's a pretty accurate statement. Regardless of how easy or hard someone finds the decision, it's a big decision.
One of the worst things about an MS diagnosis is that it separates you from the comfort of the huddled masses who usually don't have to face life altering decisions and are able to just accept the default, which is to grow old gracefully and eventually succumb to the normal infirmities of old age as been happening for millions of years. People with MS have to decide on a treatment option or decide not to treat, with it in mind that they are have to spend the rest of their lives living with the results and maybe kicking themselves in the ass, despite there not being any clear cut "right" answers.
Bob
Well said
Another thing for people to keep in mind before deciding to this is that we wil not be eligable for any other treatments or trials within the next 5 years. hopefullt with the treatment we wouldnt, but if we are seeing the results we want 3 years from now, we stil have to wait another 2 years before we are eligable for anything else.
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
