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bromley
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Jamie
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Joined: Jan 08, 2008
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 Posted: Thu Mar 13, 2008 10:52 am Post subject: |
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| Fantastic! Our neuro has demanded to see Mel today to try and talk her out of the treatment. |
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HiCy
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Joined: Oct 31, 2007
Posts: 57
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| Posted: Thu Mar 13, 2008 4:27 pm Post subject: |
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Jamie,
I will love to hear his reasoning behind his reservations with the treatment and what he suggests would be a better option.
HiCy |
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rainer
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Posts: 221
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| Posted: Thu Mar 13, 2008 4:33 pm Post subject: |
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| Nice! |
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sh8un
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Joined: May 04, 2006
Posts: 295
Location: Calgary, AB, Canada
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| Posted: Thu Mar 13, 2008 5:23 pm Post subject: |
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Ian
You really have no idea how much I love you!
NN |
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Jamie
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| Posted: Thu Mar 13, 2008 6:21 pm Post subject: |
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HiCy,
She's just got back and the general sense was he rambled on about the dangers of this and kept telling her that she's 'not bad enough' for HiCy.
He had very little understanding of the treatment in fact he said 'we used to do this at Baylor and it doesn't work'.
When she asked what alternatives there were he mentioned Copaxone (a treatment he himself had ruled out 3 months ago as not 'strong' enough for her) then Tysabri but he again ruled that out as too dangerous.
The overall theme was 'you're not bad enough to be looking at "drastic" treatments'.
Our whole argument is that NOW is the perfect time for it.
He even got an intern to do a rushed, poor EDSS test which didn't pick up on any of the things Dr. Hammond picked up on.
He grudgingly acqueisced to doing the blood work required but Mel is going to speak to her GP tomorrow to try and get the rest ordered.
This can't come fast enough.
We had to cancel our wedding planned for August in the UK because of Mel's ill health and to be told there's nothing wrong with you must be so frustrating.
He even said there's no evidence of new lesions on the MRI when the radiologist pointed out two new lesions. When pressed, he hadn't even looked at the images.
One thing is for sure regardless how this all works out, she'll be looking for a new neuro.
Jamie. |
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Jean
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Joined: May 22, 2007
Posts: 47
Location: France
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| Posted: Fri Mar 14, 2008 5:41 am Post subject: |
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| There's something I don't understand about Revimmune. The treatment itself is just cyclophosphamide, and it's already used in the treatment of MS. For instance, it is delivered in France when CRABS don't work, or for rapidly evolving MS. (The commercial name is Endoxan). And from what I've seen, it didnt' have a 100 % effect, neither on relapses or handicap progression. So why is Revimmune considered as a revolution in MS ? Is there a different protocol with it ? |
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MaggieMae
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Joined: May 24, 2007
Posts: 107
Location: Southwestern PA
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| Posted: Fri Mar 14, 2008 6:50 am Post subject: |
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Jean,
In the Revimmune study it is given in a much higher dosage. I brought this study to my husband's doctor's attention last year and he said the same thing "we've been using cyclophosphamide for years". But, the Revimmune study is not using it in the same way. His neurologist didn't even bother to read the papers I brought him.
Read back through all the post on Revimmune. |
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Lyon
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Posts: 3397
Location: Mid-Michigan
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| Posted: Fri Mar 14, 2008 7:32 am Post subject: |
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| Jean wrote: | | So why is Revimmune considered as a revolution in MS ? Is there a different protocol with it ? |
I know that seems especially odd Jean, but keep in mind that there (evidently...obviously?) are specific T and B cells responsible for the damage caused by the MS disease process and also for keeping the disease process ongoing.
Not to over complicate the situation, but there are also specific T and B cells responsible for each of the other autoimmune/inflammatory diseases.
There really is nothing terribly unique about Campath or Cyclophosphamide, other than they are chemicals which indiscriminately eliminate T and B cells. What IS unique is the way they have been used recently in high dose.
Although it might not seem like it, high dose use and outright eliminating the immune system (T and B cells) is a radical departure from the long used strategy of using, sometimes those same chemicals, to suppress/modulate/injure/wound/depress/dampen the immune system.
Because the medical world has used that strategy for so long (suppress/modulate/injure/wound/depress/dampen the immune system) without the world coming to an end, they are having an especially hard time accepting that completely eliminating the immune system in the short term, could possibly be as safe, or safer, than treatment leaving someone's immune system severely compromised long term.
In truth, it's too early to have absolute confidence in the long term efficacy and safety of "rebooting" but every indication seems favorable and manageable so far.
The reality of the situation is that neither campath or cyclophosphamide are wonder drugs deserving of any awards. The strategy of "rebooting" itself is the radical departure from the past and alone holds the promise of an actual "cure".
Along the way I hope and fully expect that campath and cyclophosphamide will be left along the wayside and replaced with something which ONLY eliminates the T and B cells responsible for the damage and continuance of the MS disease process.
Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial. |
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rainer
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Joined: Jan 18, 2008
Posts: 221
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| Posted: Fri Mar 14, 2008 4:04 pm Post subject: |
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| Lyon wrote: |
Because the medical world has used that strategy for so long (suppress/modulate/injure/wound/depress/dampen the immune system) without the world coming to an end, they are having an especially hard time accepting that completely eliminating the immune system in the short term, could possibly be as safe, or safer, than treatment leaving someone's immune system severely compromised long term.
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I would also wager that you would be hard-pressed to find a general neurologist who realizes that more aggressive early treatment of MS is where the current research is moving. Finding an MS specialist is critical.
I have a random RevImmune question to add: how is this current trial considered a Phase 3 if it is not being compared to a placebo or another MS treatment? (Or is that not required for a Phase 3 but merely common practice?) |
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dignan
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Joined: Aug 12, 2004
Posts: 1191
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| Posted: Fri Mar 14, 2008 7:06 pm Post subject: |
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| rainer, the people taking revimmune right now aren't part of the phase 3 trial. They're taking it off-label, or as part of an earlier stage trial. The phase 3 hasn't started yet. It will have to be placebo controlled, all phase 3s, at least for MS, must have a placebo arm. |
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Jamie
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Joined: Jan 08, 2008
Posts: 158
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| Posted: Fri Mar 14, 2008 11:32 pm Post subject: |
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What I don't understand is how a placebo trial is possible in the case of Revimmune.
I would have thought it would be pretty obvious if you had had chemo or not?
Thus no placebo.
Unless I'm missing something.
It has been known to happen. |
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mom10789
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Joined: May 17, 2007
Posts: 145
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| Posted: Sat Mar 15, 2008 1:11 am Post subject: |
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| does off-label mean you can have the treatment anywhere or still only john hopkins |
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NHE
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Joined: Nov 21, 2004
Posts: 769
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| Posted: Sat Mar 15, 2008 1:27 am Post subject: Re: Award for Revimmune |
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| Jamie wrote: | | What I don't understand is how a placebo trial is possible in the case of Revimmune. |
That's exactly what I was wondering. Do they give you something to make you sick and pass out and when you wake up they've shaved your head? 
NHE |
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dignan
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Joined: Aug 12, 2004
Posts: 1191
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| Posted: Sat Mar 15, 2008 10:33 am Post subject: |
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That's a good point about a placebo group. When I read the press release about the phase 3
( http://www.eurekalert.org/pub_releases/2007-10/tirg-aai100907.php )
I saw "randomized" and just automatically assumed a placebo group, but I guess they could randomize into groups getting different revimmune dosages, or revimmune vs. some other chemo-type MS treatment. This trial is going to be different in that it is only 1 year, not 2, which is the typical phase 3 trial duration for MS drugs. |
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