Back on track

ssmme · Posted: Mon Sep 08, 2008 6:48 am Post subject: Back on track

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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DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 393

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.

pvns2005 · Family Member Joined: Nov 18, 2006 Posts: 60

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.

ssmme · Posted: Mon Sep 08, 2008 10:38 am Post subject:

I got a response from Dana (Carrie's assistant) at JH. She said they are no longer accepting patients for the open label Sad

. She said phase III should be starting early next year and to keep checking back.

Marcia
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DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 156

Try Chicago.

Can't think of a 'con'.

rainer · Family Elder Joined: Jan 18, 2008 Posts: 219

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.

ssmme · Posted: Tue Sep 09, 2008 6:21 am Post subject:

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.

Marcia
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DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.

barbbelle · Newbie Joined: Jul 11, 2008 Posts: 4

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!!!

Loobie · Posted: Tue Sep 09, 2008 9:08 am Post subject:

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.
_________________
"When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 156

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.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 393

Yuppers..we all are.

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

http://www.medscape.com/viewarticle/575980

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 393

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.

Lyon · Posted: Wed Sep 10, 2008 2:42 pm Post subject:

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 156

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

odd.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 393

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