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Clinical Trials Considering or participating in research studies

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  #1  
Old Fri Jul 27, 2007, 07:36 PM
Jordan Jordan is offline
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Location: Odessa, Florida
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Tlk199

I started a trial in June on TLK199 from Telik. Has anyone had this treatment and with what results?
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Jordan diagnosed MDS 2/5/07, treated with procrit since 2002, treated with chemo for lymphoma cancer in the kidney 1998: Latest BM Biopsy 12/20/08 shows 8 % blasts with severe low counts of platelets (7)
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  #2  
Old Sun Jul 29, 2007, 06:33 PM
kertkkey2007 kertkkey2007 is offline
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Dot Wife of Kert

Kert went to Birmingham, Al right after he was diagonsed with MDS for a trial treatment of TLK199 he was on it for a week and off of it for 2 weeks for a total of 6 months. It didn't do anything for him. he took shots of procrit, neupogen and neulasta for a year until it stopped working, by this time the Dacogen has just been approved and he has been taking it since last Sept. a 3week series with 28 days in between each 5 days of infusions. He went 4 months this time without any thing so it is working well for him.
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  #3  
Old Fri Aug 31, 2007, 10:44 AM
Jordan Jordan is offline
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Finshed 4 cycles of TLK199

I am being treated at Moffitt and was one of 14 left in the TLK199 trial. Many of them dropped out due to side effects e.g. difficulty in taking the pills, I only experience severe side effects in the 3rd cycle (nausea, vomiting, etc). Just did my 3rd Bone Marrow biopsy and will get results next week. Thisweek, red cells moved up to 12, white cells to 10.03 and platelets to 22. Hopefully, the 9% blasts will not increase. So next week, I will have to make decision to stay in TLK199 trial, enter another trial, go on vidaza or dacogen????? I am currently at Intermediate level 1.
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Jordan diagnosed MDS 2/5/07, treated with procrit since 2002, treated with chemo for lymphoma cancer in the kidney 1998: Latest BM Biopsy 12/20/08 shows 8 % blasts with severe low counts of platelets (7)
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Old Wed Oct 17, 2007, 07:48 AM
lfeinsmith lfeinsmith is offline
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tlk199

Im interested in finding out more about TLK 199. Ive Diagnosed with MDS Int 1. It has been suggested that I begin TLK 199 if my counts continue to fall.Another consultant said they would only put me on an approved drug probably Vidaza. What to do??
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  #5  
Old Wed Oct 17, 2007, 12:23 PM
Jordan Jordan is offline
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Tlk199

With TLK199, I take 5,000 mg each day for 7 days and then am off for 2 weeks. At Moffitt Cancer Center, I am the only one of 14 who started the trial still on it. Side effects are body smell like a machine shop, some nausea, and one or two times pills get stuck in the throat. I finished my 6th cycle and the reason that I am still on it could be due to my body mass as I am 210 lbs and 5'10" while the others in the test were smaller in size along with other health issues.

Just got results of my third biopsy of 2007, blasts declined from 9% to 6%, WBC 7.7, Hem 12.0 & Platlets 20. Therefore I am continuing with TLK199 treatment as it held WBC in normal range, improved Hem from 9.7 to 12, but has not helped Platelets. I saw this week for the first time Dr. Alan List at Moffitt and we decided to go off the trial as it was not helping my platelets. I will be off everything for 2 monthsand then a BM biopsey again.
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Jordan diagnosed MDS 2/5/07, treated with procrit since 2002, treated with chemo for lymphoma cancer in the kidney 1998: Latest BM Biopsy 12/20/08 shows 8 % blasts with severe low counts of platelets (7)
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  #6  
Old Thu Nov 1, 2007, 09:06 PM
lfeinsmith lfeinsmith is offline
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resuts of tlk 199

Hi Im not clear of why those on the trial of tlk199 were taken off???
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  #7  
Old Thu Nov 1, 2007, 10:13 PM
Jordan Jordan is offline
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Tlk199

Those on the trial had trouble swallowing the pills. They got stuck in their throat. Therefore they dropped out of the trial.
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Jordan diagnosed MDS 2/5/07, treated with procrit since 2002, treated with chemo for lymphoma cancer in the kidney 1998: Latest BM Biopsy 12/20/08 shows 8 % blasts with severe low counts of platelets (7)
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  #8  
Old Tue Sep 30, 2008, 08:32 PM
Suzanne Suzanne is offline
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Curious if anyone else has started this trial? My mother is in the Phase 2 trial on month number 3, very nauseaus as stated by Jordan....I am wondering if that is what happens in that month. Her WBC counts are on their way up and her platelets are normal - RBC continue to need 2 units every 2 weeks.
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Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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  #9  
Old Sun Oct 19, 2008, 10:48 AM
Suzanne Suzanne is offline
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On month 4 of trial and is still vomitting the pills. Counts really aren't that great. Platelets now out of range (72 and currently 120), whites only 1.9 and continues to need 2 units of RBC every 2 weeks.

Does anyone know how many transfusions you can get? Does it change the clasification of the disease if you need to be transfused every week?
__________________
Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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  #10  
Old Sun Oct 19, 2008, 01:23 PM
Neil Cuadra Neil Cuadra is offline
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Suzanne,

I'm sorry to hear that your mom hasn't had better blood counts or gotten past the nausea.

The frequency of transfusions does not change the MDS classification, but can still affect treatment decisions. The criteria used for the World Health Organization (WHO) MDS classifications are summarized here and shown in this chart.
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