Back on track

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

Back on track

Postby ssmme » Mon Sep 08, 2008 5:48 am

Ok guys,

Lets get back on track. I am seriously considering this procedure. Just as Lyon says it is one of the closest things to a cure even if it's not a true cure. I'm thinking about the pros and cons right now. In "your alls" opinions what are the pros and cons?

Obviously this is a major procedure not to be taken lightly. Just the hurdles you must jump through in order to present your case to the providers of this procedure are mountains not mole hills.

If you've had this procedure done the big question is would you do it again and did it improve your ability to live your life the way you want to live it?

Marcia
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Postby chrishasms » Mon Sep 08, 2008 7:00 am

I would do it again tomorrow but luckily I don't have too. On my site my wife just stuck up a great reason as to why I did this.

Now that the water is unpolluted I may swim again.
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Postby pvns2005 » Mon Sep 08, 2008 7:12 am

I have my 3 month post HiCy MRI in a couple of weeks to see that the MS is dead.

Would I do it again? YES!

The main symptom I wanted gone was the debilitating fatigue. I now have relief of the fatigue and brain fog. My gait is improving as well.

The pros. Everything.

The cons. Nothing.

Good luck in your decisions you make about this treatment.

Chris S.
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Postby ssmme » Mon Sep 08, 2008 9:38 am

I got a response from Dana (Carrie's assistant) at JH. She said they are no longer accepting patients for the open label :( . She said phase III should be starting early next year and to keep checking back.

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Postby Jamie » Mon Sep 08, 2008 8:14 pm

Try Chicago.

Can't think of a 'con'.
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Postby rainer » Mon Sep 08, 2008 9:07 pm

I would try to find an unbiased neuro or maybe even an oncologist and discuss it with them. Gather as much objective info about it as possible. Find out if there have been patients similar to you in health and how they responded.

From the limited amount of reactions we have seen, I can't think of one that was negative. Even the patients who "reactivated" within a year said they would undergo the procedure again.
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Postby ssmme » Tue Sep 09, 2008 5:21 am

I'm going to see my neuro on Thursday and will talk with him about it. He's pretty well informed on ms treatments and is the one who encouraged me to go into the tovaxin study.

Have I been living under a rock? Did everyone else know that Hicy at JH was closed for now? Where in Chicago are they doing Hicy?

I guess I have more questions now.

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Pros & Cons

Postby barbbelle » Tue Sep 09, 2008 7:59 am

I was one of the 'July HiCyers' at JH and as tough as the treatment was, I would definitely do it again. I feel better. I am stronger and after only one month of being home, my therapist says that I'm not better, I'm significantly better in all aspects of testing. That includes walking speed, balance, strength and coordination. I'm not out of the woods yet, and I have a long way to go but I'm so grateful to have been given the chance. I had worked on this for a year and one week after my Mother's funeral, I got the call to go to JH. I believe that I was given a gift from God.
The only con is that I was very sick. DUH, I got 3 months of chemo squashed into 4 days so I expected that.
Best of luck to you all!!!
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Postby Loobie » Tue Sep 09, 2008 8:08 am

Marcia,

The hospital in Chicago is called Rush Hospital. Somewhere in here it's talked about and I believe there is also contact info. in that thread.
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Postby Jamie » Tue Sep 09, 2008 10:04 am

There's a post on the front page of the revimmune forum entitled Chicago Rush Hospital.

Wow, Mel was so lucky to be one of the 29.
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Postby chrishasms » Tue Sep 09, 2008 2:46 pm

Yuppers..we all are.

Take a look at this if you haven't already.

http://www.medscape.com/viewarticle/575980
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Postby chrishasms » Tue Sep 09, 2008 7:00 pm

Sorry, if you Google High Dose Cyclophosphamide it's one of the articles on the 1st page. It's dat6ed from August. I didn't realize it didn't come up right.

I just spent the evening with 2 of the top doctors in the nation concerning MS and I am happy to say they think HiCy is definitely going to be the way to end MS in a hurry in the RRMS stage for the future.

We all agree there is still work to be done. We still have the later stages of the disease and the damage left to fix.

I also found out one of the doctors at dinner is willing to pick up my treatment. Seems he has had about 400 patients that used to be Dr. Bowling's patients and they were none to happy with their care either. This guy is actually proactive and glad to help.
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Postby Lyon » Wed Sep 10, 2008 1:42 pm

.
Last edited by Lyon on Sun Nov 27, 2011 1:10 pm, edited 1 time in total.
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Postby Jamie » Wed Sep 10, 2008 7:51 pm

the link doesn't work put if you paste the link into google and click the search results it does.

odd.
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Postby chrishasms » Thu Sep 11, 2008 6:14 am

Ya Jamie's got it...weird indeed.
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