Home         Forums  

Go Back   Marrowforums > Treatments > Clinical Trials
Register FAQ Search Today's Posts Mark Forums Read

Clinical Trials Considering or participating in research studies

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Aug 23, 2009, 10:28 AM
Mimi C Mimi C is offline
Member
 
Join Date: Jun 2009
Location: Fouke, AR
Posts: 14
Clinical Trial - Clorfarabine

Has anyone heard anything about a Clorfarabine clinical trial? My mom has been tested and qualifies for the trial. My mom has MDS. We are trying to decide now if we want her to participate. Any info will be greatly appreciated.
__________________
Mimi, daughter of Lucy age 77, diagnosed MDS Jan. 09; Vidaza Jan 09-Jun 09 no improvement; Clofarabine clinical trial Oct 09-Feb 10 mild improvement in blasts; blasts 4% in Aug 09; 30% Sep 09; 2% in December; 30% in March; AML diagnosed April 2010 .
Reply With Quote
  #2  
Old Sun Aug 23, 2009, 02:54 PM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Clofarabine

Hi Mimi,
Clofarabine is tested in 81 clinical trials (clin trials gov) often in combination with other drugs for high risk MDS and other diseases. From Anderson Cancer Center they reported a study where 61 patients only got Clofarabine either orally or intravenously during the ASH conference 2008.

30% of the patients got a complete remission, 12% a partial remission and 5% haematological improvement but they don’t tell us during how many weeks the patients were improved. Perhaps it is better to take the drug orally and not in very high doses.

http://abstracts.hematologylibrary.o...urcetype=HWCIT
Kind regards
Birgitta-A
70 yo dx MDS Interm-1 May 2006
Reply With Quote
  #3  
Old Sun Aug 23, 2009, 03:21 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Clinical trials benefit future patients and medical researchers but you and your mom need to do what's best for her. There are two tradeoffs to consider: first the risks and possible benefits of the trial, and second the treatment she'd receive on the trial vs. the treatment she'd receive if she chooses not to participate in the trial.

Did her doctor recommend Clofarabine whether or not she's in the trial? If you don't know what non-trial treatment she'd get, it's worth discussing with her doctor, since you should know all of her choices.

There's at least one trial that will be testing the appropriate dosage for Clofarabine. Is that the type of trial she's considering?

Note that the correct spelling is "Clofarabine".
Reply With Quote
  #4  
Old Thu Sep 3, 2009, 04:44 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
FDA will decide about clofarabine for AML

Hi Mimmi,
Here is more info about Clofarabine - probably they want more research before approval for AML:

http://www.oncologystat.com/news-and...lt_AML_US.html
Kind regards
Birgitta-A
Reply With Quote
  #5  
Old Thu Oct 15, 2009, 02:04 PM
Mimi C Mimi C is offline
Member
 
Join Date: Jun 2009
Location: Fouke, AR
Posts: 14
Clofarabine Clinical Trial

We started the trial last week. Mom's blasts jumped from 4% in August to 30% the end of September. Mom had tried Vidaza for 6 months without success. We are going through Baylor University. I realize clincal trials can be for future patients but I also felt that we were running into possible AML if we didn't get started on something. My mom was always a really healthy and active person until about a year or year and a half ago she started getting sick a lot. Three years ago she was having some problems and had her blood work done. Her WBC level was very low. I think she has had this longer than their estimations of a few months prior to diagnosis.
They put a port in last week in the middle of the first 5 days of the clinical trial. It is very painful but helpful during the transfusions. She has had 2 transfusions so far. None were needed until last week.
We are in the hospital now--she has pneumonia. She is feeling better but the pneumonia isn't budging yet. We've been here for 2 days.
__________________
Mimi, daughter of Lucy age 77, diagnosed MDS Jan. 09; Vidaza Jan 09-Jun 09 no improvement; Clofarabine clinical trial Oct 09-Feb 10 mild improvement in blasts; blasts 4% in Aug 09; 30% Sep 09; 2% in December; 30% in March; AML diagnosed April 2010 .
Reply With Quote
  #6  
Old Fri Oct 16, 2009, 02:33 AM
ann ann is offline
Member
 
Join Date: Aug 2009
Location: Burleson, TX
Posts: 77
Clofarabine trial

I hope that this treatment works for your mom. My husband has been on Vidaza for 3 months. He will finish his 4th round of treatment tomorrow. His doctor is very pleased with how he is progressing. His counts are up and holding. He hasn't had a transfusion in almost 3 weeks and feels so good.
I know that he will be doing the Vidaza for as long as it helps but I want to be ready for something else if Vidaza stops helping. Would be interested in
how your mom does on Clofarabine. Keep us updated. What hospital is she in and where are these trials being held?
You are in my prayers and they do work!
ann
Ann, wife of Henry 73 year old dx 6/30/09
__________________
Ann, wife of Henry 73 year old diagnosed MDS, congestive heart disease and pulmonary edema..
Reply With Quote
  #7  
Old Sat Oct 17, 2009, 10:48 AM
Mimi C Mimi C is offline
Member
 
Join Date: Jun 2009
Location: Fouke, AR
Posts: 14
Clinical Trial - Clofarabine

Ann,
We are doing the clinical trial at Baylor University. Currently we are in a hospital in Texarkana, TX because we didn't feel my mom could make the 3 hour trip back to Dallas to treat the pneumonia. I'm waiting for the doctor to come in and let us know if we can be released. Our next appointment in Dallas is Monday. Mom's platelet counts are falling every day. They were 11 on Tuesday. Today they are 7. White blood count is less that 0.4. It fell that low with the Vidaza treatment too. Right after the first week on Vidaza my mom caught a cold from my dad and wound up in the hospital for three days. Her WBC have never really recovered on any treatment so far.

I will keep posting updates as we go. This is not what I expected to happen to my incredibly strong and active mother.
__________________
Mimi, daughter of Lucy age 77, diagnosed MDS Jan. 09; Vidaza Jan 09-Jun 09 no improvement; Clofarabine clinical trial Oct 09-Feb 10 mild improvement in blasts; blasts 4% in Aug 09; 30% Sep 09; 2% in December; 30% in March; AML diagnosed April 2010 .
Reply With Quote
  #8  
Old Wed Jun 10, 2015, 08:14 PM
Umaterr Umaterr is offline
Member
 
Join Date: Aug 2014
Posts: 15
Does anyone know of the top what the latest information is on clofarabine?
__________________
husband dx MDS 8/4/14, blasts 3%, 17Q-, low red, white, platelets. Myeloma dx in 1999, stem cell transplant 1999.
Reply With Quote
  #9  
Old Thu Jun 11, 2015, 11:57 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
Quote:
Originally Posted by Umaterr View Post
Does anyone know of the top what the latest information is on clofarabine?
I looked around for information about it, and here's what I learned.

Clofarabine (trade names Clolar or Evoltra) was developed by researchers at the University of Texas MD Anderson Cancer Center. They did studies like this one for AML, CML, and MDS.

Dr. Guillermo Garcia-Manero reported good results for high-risk MDS patients. He is currently running a newer study focused on MDS, with results expected in 2017.

Clofarabine is FDA-approved for pediatric acute lymphoblastic leukemia, but I don't know if it's available to MDS patients outside of clinical studies.
Reply With Quote
  #10  
Old Sun Jun 14, 2015, 09:48 PM
Umaterr Umaterr is offline
Member
 
Join Date: Aug 2014
Posts: 15
Neil, thank you for the info on clofarabine. I've done some research and as you must know, there is a great deal out there. I was unable to find the info you commented on but it is exactly what I was looking for. My husband's onc suggested it because his counts did not significantly change from 6 months of decitibine. Before we go down that road, I wanted to get as much info on it as possible so I appreciate your help.
__________________
husband dx MDS 8/4/14, blasts 3%, 17Q-, low red, white, platelets. Myeloma dx in 1999, stem cell transplant 1999.

Last edited by Umaterr : Sun Jun 14, 2015 at 10:45 PM. Reason: Found sources
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
New Promacta (Eltrombopag) Clinical Trial at NIH Sally C Clinical Trials 73 Sun Dec 30, 2018 05:52 AM
Learning About Clinical Trials and Finding Clinical Trials Marrowforums Clinical Trials 0 Wed Jun 3, 2015 05:10 PM
Curcumin/Gingerol Clinical Trial for MDS Janice M. Clinical Trials 13 Mon May 13, 2013 10:03 AM
Thank you to clinical trial participants! Neil Cuadra Clinical Trials 7 Sat Jan 12, 2013 03:49 PM
Clinical Trial Fibrogen 2216 seniorrico Clinical Trials 2 Sun Jan 28, 2007 12:48 PM


All times are GMT -4. The time now is 05:30 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org