To re-dose or not...? : Revimmune (cyclophosphamide or cytoxan)

View unanswered posts | View active topics

Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

All times are UTC - 8 hours [ DST ]

To re-dose or not...?

Page 1 of 1

[ 3 posts ]

Print view

Previous topic | Next topic

Author

Message

RedPenguins

Post subject: To re-dose or not...?

Posted: Mon Apr 06, 2009 2:36 pm

Family Elder

Joined: Sat Apr 26, 2008 3:00 pm
Posts: 153
Location: Los Angeles, CA

So, that is my question!

Dr. Kerr told me to re-dose, sooner than later, as I have some symptoms.

My last MRI did not have any enhancement (this was in March. December had enhancement). No word that the lesions are shrinking or anything.

I'm just not sure what to do. I wish it was local and hate that I can't have a doctor here in Los Angeles do this with me.

I also hate that it feels like I'm getting worse - although I'm still WAY better than I was 9 months ago before I had the treatment. This weekend I fought the muscle spasms and rode my bike 10 miles (for me that is huge, especially b/c I am so huge and out of shape). And it was warm outside, but I did okay.

The fatigue and vision problems are probably the worst sx that I have. I'm taking 2 provigil a day and wearing that ADD patch/medicine. Sigh.

I am scheduled for HiCy on April 27th!!!

However, I am leaving at 6am tomorrow morning for a vacation in Mexico. Will be gone thru Sunday.... hoping to have some relaxation and fun before re-dosing (if I go through with it).

~Keri

Top

Jamie

Post subject:

Posted: Mon Apr 06, 2009 8:40 pm

Family Elder

Joined: Mon Jan 07, 2008 4:00 pm
Posts: 596

Keri,

In my humble opinion it is worth one more throw of the dice, I know its not easy but there is nothing imminent that is offering the chance of such success.

The choice is yours but I don't think the learned chaps at JH would be wasting anyones time if they didn't think it worth another go, they've told plenty of other people 'no' for the treatment.

Again I'm not rabidly pro-HiCy but I do know that Mel would do it again if necessary. Campath often needs a follow up dose too.

Whatever you do, be well.

Jamie

Top

chrishasms

Post subject:

Posted: Tue Apr 07, 2009 7:36 am

Family Elder

Joined: Thu Sep 14, 2006 3:00 pm
Posts: 1161

Hey Keri keep in mind one other person has had to redose to get this bugger too. I guess they are close to 9 month out now. Email Dr. Kerr or Brodsky and see what they have to say about it.

Top

Page 1 of 1

[ 3 posts ]

Board index » Treatments » Revimmune (cyclophosphamide or cytoxan)

All times are UTC - 8 hours [ DST ]

Topics		Author	Replies	Views	Last post
Related topics
	High Dose Cyclophosphamide outside of the US [ Go to page: 1, 2 ]	L	24	4168	Sat Nov 29, 2008 10:34 am dave38
	High Dose Cyclophosphamide (Revimmune)	Lyon	4	2716	Mon Oct 15, 2007 2:55 pm Lyon
	High Dose Cyclophosphamide Papers	L	2	1460	Fri Sep 12, 2008 5:26 pm L
	I did High Dose Cytoxan Treatment in North Carolina. [ Go to page: 1, 2 ]	DRStines727	16	4610	Wed Apr 08, 2009 10:12 am chrishasms
	Study: high-dose Cytoxan effective for RRMS, not so for SPMS [ Go to page: 1, 2, 3 ]	marcstck	33	3310	Wed Dec 31, 1969 5:00 pm Guest

Who is online

Users browsing this forum: No registered users

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Jump to:

This Is MS Multiple Sclerosis Community: Knowledge & Support

To re-dose or not...?

Who is online