Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Veltuzumab - should we have high hopes?

More
15 years 1 week ago #8421 by athos45
The email i got from the website contained some welcome developments concerning this drug.

SHould we really be optimistic with it?

Well, if i had a wish list for it, it would be:
1. not too pricey
2. more available worldwide
3. high success rate of long remissions

Father of Tonio, 8 yrs old w Chronic ITP
More
15 years 1 week ago #8424 by farida
Replied by farida on topic Re: Veltuzumab - should we have high hopes?
what website are you talking about, what is these drugs give us high hopes like that, can you please send the website
More
15 years 1 week ago #8425 by DeeDee Marie
Replied by DeeDee Marie on topic Re:Veltuzumab - should we have high hopes?
Hi, I originally signed up to be in the trial study for Veltuzumab at USC. It is just like Rituxan, except it is given in lower doses and is given as a "shot", not through an IV. From what I understand, you have a less chance of an infusion reaction. But, as far as the outcome on the success rate--it is similar to Rituxan. I had signed up for the study because I thought I would be able to tolerate two injections compared to four with Rituxan. It does act in the same way as Rituxan--so if you didn't respond to Rituxan, you may not respond to this drug.

My platelets were at 12000 in the morning when I signed up for the study--then in the afternoon they went up 32,000--so I didn't qualify. So far, my platelets have been staying up--so I still don't qualify. I think this will be a good drug once they get it approved. You won't have the infusion reactions. They still have some trials going on for those who would like to try it (and, you don't have to get your insurance involved).
  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
More
15 years 1 week ago #8430 by Angel85
Replied by Angel85 on topic Re:Veltuzumab - should we have high hopes?
From the pdsa site, cause i got an email about it too. You can sign up for newsletters
More
15 years 1 week ago #8437 by athos45
Replied by athos45 on topic Re:Veltuzumab - should we have high hopes?
Farida: In this website, there's a monthly email thati nforms us of the developments surrounding ITP

Deedee, how does one qualify to be in the trial? Is there an age limit?

Father of Tonio, 8 yrs old w Chronic ITP
More
15 years 1 week ago #8439 by farida
Replied by farida on topic Re:Veltuzumab - should we have high hopes?
thank you for your reply, : i read about Veltuzumab, my son is 17 so his doctor don't even recommen Nplate for him because it's still new , and he dosn't know what is the side effect on the long term
More
15 years 1 week ago #8441 by DeeDee Marie
Replied by DeeDee Marie on topic Re:Veltuzumab - should we have high hopes?
I'm fairly sure that the age limit is 18 (but you can go to the new PDSA newsletter and click on the Veltuzumab trial study. It will take you to their information page). Your platelets need to be 30,000 or under when you start the trial. Also, you need to have failed one ITP treatment. They give you a physical and an EKG to make sure you don't have any disqualifying health issues (can't remember what they were). I really think that Veltuzumab will end up being a lot easier to take than Rituxan, especially since you only take the two injections (and not an IV). They really do need more ITP patients. I was only number 10 at USC--but like I said, I didn't qualify since my platelets went up.

Dr. Howard Liebman heads up the study at USC; he is also one of the PDSA consultants--so you might want to constact him and find out where there is a trial going on near you. I would check it out. At least all you blood work and checkups (plus the medication) would be without any cost to you. But, you do need to have your regular doctor for other medicatons or if you need IVIG. Hope this helps ;)
More
15 years 1 week ago #8442 by DeeDee Marie
Replied by DeeDee Marie on topic Re:Veltuzumab - should we have high hopes?
Here is the information below on the Veltuzumab trial study. It did say you need to be 18 years or older. There was about 6-7 states listed that are doing the study.

www.clinicaltrials.gov/ct2/show/NCT00547066

Heather Horne 973-605-8200 hhorne@immunomedics.com
More
15 years 1 week ago #8448 by farida
Replied by farida on topic Re:Veltuzumab - should we have high hopes?
thank you DeeDee for your quick reply , i have to wait ,my son is 17 , and his doctor dosn't like to give him even rituxmab now, i wish he can find somthing eles for him, i had to change his doctor because my son went to the collage last week , he has to be seen by a new doctor in the new city