123

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

123

Postby chrishasms » Thu Feb 07, 2008 2:53 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 2:26 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby Jamie » Thu Feb 07, 2008 7:36 pm

Dude!

That's fantastic!!!!!

Awesome.
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 4:00 pm

Postby HiCy » Thu Feb 07, 2008 7:43 pm

Chris,

That's great news. You want to do this as an outpatient and be able to sleep at night in a real bed. It is very straight forward. The four days in the IPOP are 10 hour days but it is not that bad. You have TV and I would suggest a lap top with movies. You can also find a few good books. I am wondering if this approval was your insurance or just from JH. If the insurance can keep you out of the hospital and save a few bucks they will. My insurance approved me with the condition that it be IPOP only unless complications developed.

HiCy
User avatar
HiCy
Family Member
 
Posts: 63
Joined: Tue Oct 30, 2007 4:00 pm

Postby Lyon » Thu Feb 07, 2008 9:14 pm

.
Last edited by Lyon on Tue Nov 29, 2011 7:23 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Loobie » Fri Feb 08, 2008 6:02 am

In the words of Homer:


"WOOOOHOOOO"

Simpson, not the literary guy :lol:
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby ssmme » Fri Feb 08, 2008 7:47 am

I am rooting for you. If Tovaxin doesn't work out for me, this is the next path I wish to travel. Please keep us informed as you have been doing. My fingers are crossed for you and I'm sending good thoughts your way.

Marcia
Marcia
User avatar
ssmme
Family Elder
 
Posts: 351
Joined: Sat Sep 22, 2007 3:00 pm
Location: Lexington, KY

Postby Loobie » Fri Feb 08, 2008 8:58 am

Marcia,

I'm exactly like you. If the T-cell stuff doesn't work within 6 months of first jabs, I'm going to Baltimore!! I am so tired of watching my physical self just keep slipping away when there is a more "active" route I could go. I get my first extension shots on Mar. 5, so I'll make sure I keep everyone posted on how I'm doing. Since we all know we won't be unblinded for a while, I'm only giving Tovaxin about 5 or 6 mos. before I pull the trigger. I'm all about furthering the cause by being a lab rat, but personally I've just slipped so far that I can't jeopardize my family anymore if there is something that is working better. My hope is Tovaxin really works, but I've already greased the skids to make a change if need be. My work is giving me a leave of absence if I need it and my family (God love 'em) has stepped up to help with bills while no $$ is coming in. I'm almost ready to make the change now, but that would mean that all the gyrations I went through last year were for naught and I just can't not give it a try.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby chrishasms » Fri Feb 08, 2008 10:23 am

123
Last edited by chrishasms on Sun Dec 06, 2009 2:27 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby flipflopper » Fri Feb 08, 2008 10:35 am

Everything seems to be moving along in the right direction.


I just wanted to wish you all the best with Revimmune Chris! I'll be keeping an eye out for your wife's posts.
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 4:00 pm

Postby Loobie » Fri Feb 08, 2008 10:45 am

Chris,

Here's to you man! Good luck and we'll hope and pray for you to come back with great news!

Lew
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Lars » Tue Feb 12, 2008 11:22 am

Chris,
Another Forum "back slap". Very happy for you. A+ on your pro-active report card. By the way, I think maybe JH should comp. you, I think your work has landed them a lot of their new clients.
Be Well,
Lars
Lars
Family Elder
 
Posts: 433
Joined: Wed Mar 21, 2007 4:00 pm
Location: Durango, Co

So excited

Postby Nya » Wed Feb 13, 2008 1:53 pm

Hey Chris! Congrats! My husband has an assessment appointment w/ Dr Kerr on Feb 27th. Maybe we'll see you there? Do you have any advice? I'm so thrilled but also afraid of getting my hopes up.
User avatar
Nya
Newbie
 
Posts: 4
Joined: Tue Feb 12, 2008 4:00 pm

Postby HiCy » Wed Feb 13, 2008 5:10 pm

Nya,

Good luck to you and your husband. I went through the procedure back in September. Dr. Kerr, Dr. Brodsky and the JH staff are the best group of doctors you could ask for. You will feel very at ease talking with them about the procedure and its possibilities.

I am amazed at how the exposure to Revimmune has snowballed due to this forum. I recommend to everyone that is reading this to give them a call and give this procedure a shot. I felt back last spring when I first contacted JH that the downside risk to this protocol was zero and the upside was huge. I still feel that way today. Good luck!

HiCy
User avatar
HiCy
Family Member
 
Posts: 63
Joined: Tue Oct 30, 2007 4:00 pm

Postby chrishasms » Wed Feb 13, 2008 7:09 pm

1213
Last edited by chrishasms on Sun Dec 06, 2009 2:27 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby HiCy » Wed Feb 13, 2008 7:36 pm

Chris,

That's great news!! I have my six month check up on the 26th of March. I will try to come find you over in IPOP that morning. You will be almost two weeks into the treatment and starting to feel a little better. If I remember correctly your white cell count should be bottoming out about then. It is pretty amazing how they have the timing down pat. You have the four days of HiCy and then they start giving you Nupogen about day 7-8 if I remember correctly. Your old immune system dies off and is at about zero for a day or so and then the Nupogen kicks in and your whites tick up a little at first and then increase exponentially after that. You will be amazed at how they give you a time schedule of progress and you will hit it almost exactly. The four days of HiCy are not a lot of fun but just remember it is only four days and then you start to feel better every day after that. You just have to keep telling yourself that it is only four days. I am excited for you that you have taken the steps to come this far.

HiCy
User avatar
HiCy
Family Member
 
Posts: 63
Joined: Tue Oct 30, 2007 4:00 pm

Next

Return to Revimmune (cyclophosphamide or cytoxan)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service