Stay away from neuro talk to discuss this!!

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

Stay away from neuro talk to discuss this!!

Postby chrishasms » Mon Jul 07, 2008 11:39 am

Sorry
Last edited by chrishasms on Tue Jul 08, 2008 2:26 pm, edited 1 time in total.
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Postby av8rgirl » Mon Jul 07, 2008 3:36 pm

Chris

We discuss at Neurotalk! I truly believe you are mistaken! It's your attitude about Revimmune being the only viable treatment that is causing you problems with the members!!

I think we've had a pretty healthy discussion going on about Revimmune with at least one other member of NT who is currently undergoing the procedure.

Then you entered the conversation and are telling everyone who isn't on or considering this therapy that they are not very smart for not considering it.

You have to realize that some people don't tolerate it, some are in other clinical trials, and some just want to absorb the data and wait and see what the trial evidence produces. It's not that they don't want to undergo the procedure, but having it crammed down their throats is not a way to get people's attention!!

You don't just join a forum and start shooting people because they don't believe the same way you do! I've been a member here for awhile but only post in the Tovaxin forum b/c that's what I am interested in...here. But you got my attention by knocking down the door at my home. So, I am inviting you back to take a look around and see that we are really a bunch of very caring and nice people with MS. We do listen and we do care about each other.

NT is not just about MS. It's about all things neurological.

Just b/c Tovaxin didn't work for you, and maybe a few others doesn't mean it isn't going to work for some. I think I tried to explain that to you, but you have your mind made up that Revimmune is the only therapy out there and that's that. Period. Fine Chris. If it works for you, I am very happy for you. But for those of us who have had MS for a bit longer and have tried other therapies and have been burned a few more times, we tend to be a little more skeptical and the word "cure" doesn't hold water with us. So, bear with us and don't back us into a corner and tell us that Revimmune is a cure. It's not. It won't be considered a cure until you've been MS free for at least 10 years!

Bad mouthing another forum is not professional.

I wish all the luck in the world with this therapy. I hope it is a cure.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby chrishasms » Mon Jul 07, 2008 3:47 pm

Sorry
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Postby av8rgirl » Mon Jul 07, 2008 4:10 pm

Chris

Where in any of the literature are the Docs at JH saying that this is a cure? I've not seen it and they are publishing it as "potential" cure...their words. In all of my science and scientific research, I've never seen any treatment or trial touted as a cure unless the data shows 10 years disease free. I've done my homework Chris. I've been around a lot longer than you have although I don't claim to know everything about everything, I do know that for a fact. If these docs are claiming this as a cure for MS right now, then they should be publishing it that way and have FDA approval for it and I don't think they do. It's not been approved for that yet and you cannot show me that it has.

Chris...it works for you and a few others right now which is absolutely wonderful. Don't get me wrong on that. You are totally misunderstanding the discussion. Just because people disagree with you, or don't jump on this doesn't mean they are wrong. Are you going to beat me up b/c I CHOOSE to continue with the Tovaxin trial?

I think you are blowing this all out of proportion. No one has accused you of selling anything. You are the one who brought up the fact that you are stockholder and titled your thread Not a Sales Pitch. That was YOUR idea, no one elses. There is another member of the forum who has been very informative about the procedure and no one is beating her up as you are accusing member of doing to you.

It's all in the presentation.

Again, I wish you the best. I hope you stay healthy and continue to get better.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby chrishasms » Mon Jul 07, 2008 4:19 pm

End of story
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Postby rainer » Mon Jul 07, 2008 4:51 pm

chrishasms wrote:
I have never once used any terminology that the docs at JH would use with you. They are more than willing to tell you the chances are better than 50/50 we willmake it the 10 years necessary if others w/o Copaxone are already.


50/50 is a long way from 100%. These are also the doctors running the study i.e. the ones with the most invested in RevImmune working. There is a reason for double blind studies and large phase 3 trials.

RevImmune has had awesome early results and gives reason for people to be hopeful. But it is way premature to call it a cure. My 2 pennies.
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Postby chrishasms » Mon Jul 07, 2008 4:56 pm

Sorry
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Postby av8rgirl » Mon Jul 07, 2008 5:14 pm

chrishasms wrote:It's not my thread that says "not a sales pitch!"

The reason why you haven't heard them say it publicly is because the FDA won't let them.

As Jamie, and a few of the others who have had this will tell you, a few of those docs, like Dr. O'Donnel, will refer to it as that. The others smile from ear to ear and say, "Wait a couple of more years."

Until someone else shows me something that heals lesions and improves disability scores or shows me someone who has not experienced this same result from it I will not, I repeat, will not stop referring to this as a cure.

If my docs know I am doing it and they don't stop me why would I listen to someone who was just as sick as I was?

End of story


You are right, it was not your thread titled not a sales pitch but another person who is currently undergoing Revimmune therapy. I wonder why she felt the need to title her thread that way...could be b/c of your pitching Revimmune??? Just my two pennies.

Chris, it's not a cure but if you want to believe it. go right ahead. More power to you. Honestly. I am not trying to dissuade you. I, like you, am only trying to get the information out there that legally this is not yet been proven as a cure. If the JH docs are promoting this as a cure FOR MS, then they must know something that the rest of the world does not know. It's not the FDA that's stopping them, it's the facts.

The scientific world would not let them tout this as a cure for MS until they have proven it as such. Show me where they have? Show me the proof? Has there been enough data for 10 years to prove this a cure for MS? Where is the data? Where's the scientific proof? Just you? 1, 2, 3, 5 people for 2 years? That's not enough.

You say you don't want anything sugar coated, well neither do I. This darn disease is kicking my butt and has been since I was dx'd in 2001. Don't you think if this therapy had been available to me and "I qualified" for it, I would be doing it. He!! yes. But you know what...I don't. So stop trying to tell me I am not doing everything I can to treat MY disease MY way. I am ...
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby chrishasms » Mon Jul 07, 2008 5:29 pm

Sorry
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Postby marcstck » Mon Jul 07, 2008 5:34 pm

Chris, as I said over at neurotalk, I believe that Revimmune does represent a significant advance in the treatment of MS. I'm sorry that, for my particular flavor of MS (PPMS), it apparently will not work. The doctors will not accept you into the program if you're MRIs do not show signs of active inflammation, and mine don't. Given the chance, I think I would jump at the treatment.

Having said that, the way you handled the thread over in NT is completely inappropriate. You chose to demean and denigrate the entire population over there simply because you were met with some spirited disagreement.

You clearly are an evangelist for Revimmune, and there's nothing wrong with that, giving your honest belief that it is cured you of a miserable disease. But like many true believers, you seem to be threatened by those who would have the temerity to question your dogma. You did yourself, and everybody else at that board, a gross disservice with your flippant and insultingly dismissive comments.

I understand your enthusiasm for Revimmune, based on your belief that it has "cured" you. The fact is, nobody knows if it has in fact "cured" you, and we won't know for at least another five to 10 years.

We also won't know what the possible side effects of intense high-dose cyclophosphamide immunoablation will have down the road for quite some time. In the past, Cytoxan therapy has been linked to various forms of cancer, including lymphoma and bladder cancer. The data on Revimmune is still immature, and blanket assertions such as the ones you made simply cannot be backed up. Fantastic claims require fantastic proof, and though the data is so far encouraging, we have yet to see anything that would be considered ironclad proof.

Let's not forget that Revimmune is very similar to HSCT, and that both treatments seek to combat the disease by rebooting the immune system. The difference is that Revimmune does not require the transplantation of autologous stem cells. The data on HSCT is far less impressive than that for the preliminary numbers on Revimmune. HSCT has shown itself to not be very effective in treating SPMS and PPMS, and some RRMS patients that initially showed progress have seen their disease reemerge after several years. These facts should give pause to anyone touting Revimmune as a cure for MS.

Your parting comments at neurotalk were rude and undignified. You would do yourself and your cause a great service to go back and offer an apology. The fact that you have some fervent beliefs does not make you above reproach, and the fact that some would seriously question you does not make them "happy to have MS". That last statement, in particular, is asinine, and beneath you...
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Postby chrishasms » Mon Jul 07, 2008 5:53 pm

Sorry
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Postby chrishasms » Mon Jul 07, 2008 5:56 pm

Cytoxin in a pulsed format shows a risk to cancers but in a HiCy format since the late 70's this has shown safe.
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Postby marcstck » Mon Jul 07, 2008 6:50 pm

And asinine is saying that anybody is happy having MS. Some of the afflicted might be complacent, some may be dejected, some may be weary and beaten down, and some may be misguided, but I can guarantee you that none is happy to be stricken with this horrible disease.

In my own case, I've tried Rebif, plasmapheresis, Tysabri, antibiotics, intrathecal methotrexate, a grueling 10 day course of IV Solu-Medrol (which left me with a terribly painful case of avascular necrosis) and any number of alternative therapies. None have worked, but I will not rest in my quest to battle the disease. I was among the first to contact Johns Hopkins regarding Revimmune, back when the first press release was issued in March of 2007. When they started accepting applications for treatment, I was among the first to have my records examined by them. I was ultimately rejected this past February.

I know that you ventured on to neurotalk with the best of intentions, but your enthusiasm for and belief in Revimmune does not give you license to denigrate those that would disagree with you or question their own willingness to undergo treatment.

The last few comments that you left on that board were absolutely deplorable...
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Postby chrishasms » Mon Jul 07, 2008 7:32 pm

Sorry
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Postby av8rgirl » Mon Jul 07, 2008 8:10 pm

Thanks Marc. I know that I am not one of 'those folk" who sent Chris any email. If I have something to say to him I post it right up front to his face.

For someone who wants to be a spokesman for Revimmune and claims to be cured of this horrible disease, you sure are bitter towards people who do have this horrible disease.

I would think you would be a lot more compassionate.

Thanks for the info Marc. I've learned a lot more from you in a couple of posts than from Chris' posts over the past few days. And thanks for backing up my 10 yr info about scientific data. I am sure the JH docs would agree with you as well.

I hope you continue on your healthy path Chris. You certainly need the attitude adjustment - oh wait, that's the name of my airplane!!! LOL!
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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