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Revlimid trial

This topic has 8 replies, 1 voice, and was last updated 18 years, 6 months ago by **DONOTDELETE**.

Viewing 9 posts - 1 through 9 (of 9 total)

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October 6, 2005 at 4:10 am #9142

Naomi
Member

Hi to all;
I was told by the trials coordinator today that the Phase II revlimid trial is continuing. Anyone who is TX DEPENDENT AND HAS 5q- can contact Connie Sparks at Strong Memorial Hospital in Rochester NY and ask her about the details. For those living out of the area there is always the angel flights that help you get to a place for treatment. One thing, Celegene does reimburse for some of the costs.

I told Connie today that I would put this info on the forum. They are looking for MDS patients for the continuing trial.

Naomi

October 6, 2005 at 3:11 pm #9143

JulieMarie
Member

Naoomi,

That is wonderful news!!! My mom is 5q- but has only had one transfusion so far back in January. Her hemoglobin is hanging right there at 9.0 for the past few weeks. Almost want it to drop down so they would start her on transfusions just so she could get into this clinicial trial. Do you know a number I can call Connie at so I can ask her some questions.

Thanks for everything you’ve done!

October 6, 2005 at 8:04 pm #9144

Suzanne
Member

You can usually find a list of where the trials are and the contact people on http://www.clinicaltrials.gov

October 7, 2005 at 7:07 pm #9145

JulieMarie
Member

Hi everyone!

Naomi gave me contact information for Connie, my mother called today and they took down her information since they are just gathering information right now, but said someone will be getting back with her next week. I”ll be on here a few different times over the weekend so if you want further information feel free to give me a buzz…

October 8, 2005 at 4:32 pm #9146

**DONOTDELETE**
Member

Naomi,

Do you think Connie Sparks at Rochester would be able to give me Revlimid? I could get to Rochester from UK, but can’t find her name on Strong Memorial website to contact her. Can you help at all?

October 9, 2005 at 12:59 am #9147

Naomi
Member

Hi Sophie:
Connie is a trial coordinator. The doc is the one to prescribe the revlimid. This is an extension of the trial that I have been on.
You can reach Connie at Connie_Sparks@URMC.Rochester.edu and she will answer questions for you.
The requirement for this trial is to be transfusion dependent and have 5q- as your diagnosis.
Hope this helps
Naomi

October 9, 2005 at 3:08 am #9148

Fran
Member

Hello Naomi:

Husband is 73, diognoised with MDS about 3 months ago. Will start on Vidaza Nov. 10th. He hasn’t had a blood test for over 1 month now and the DR still wants to start him on Vidaza anyway. He has a bad heart and he only gets tired sometime. Any idea’s on what he can do would be appreciated.
Thanks..His wife…Fran

October 9, 2005 at 3:30 pm #9149

Carl
Member

Sophie,

If you are interested, there are some trials in the UK and Europe for Lenalidomide (Revlimid).

Go to the link:http://www.clinicaltrials.gov/ct/show/NCT00179621?order=11

October 9, 2005 at 9:26 pm #9150

**DONOTDELETE**
Member

Naomi & Carl
Thank you both. The trials in UK/Europe are taking forever to get underway, that’s why I was thinking of coming to USA. Will try emailing Rochester and see what happens.
All the best
Sophie
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