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Clinical Trials Considering or participating in research studies

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  #26  
Old Wed Jun 15, 2016, 01:20 AM
Cheryl C Cheryl C is offline
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Data - I appreciate your honesty. How are you now? I hope your recovery from the HSCT has taken a turn for the better.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #27  
Old Thu Jun 16, 2016, 03:16 PM
Data Data is offline
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Quote:
Originally Posted by Cheryl C View Post
Data - I appreciate your honesty. How are you now? I hope your recovery from the HSCT has taken a turn for the better.
Cheryl,
Thanks for the post. I am still fighting the CMV and BK virus.

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #28  
Old Fri Jun 17, 2016, 06:53 PM
Data Data is offline
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Results of First CD34+ Mixed Chimerism Analysis

The study coordinator e-mailed me today and said the results first CD34+ Mixed Chimerism Analysis were well above 90% which means I don't start the lenalidomide. They will test it again in 30 day and if I am still above 90%, I will be off the study.

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #29  
Old Sun Jun 19, 2016, 03:56 AM
Cheryl C Cheryl C is offline
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Hi Data - For your viruses, have you tried any natural immune system boosters/antivirals like Olive Leaf Extract? I'm really impressed with it after it got rid of my shingles in 3 days about 3 months back. I took the liquid version with the highest level of oleuropein I could find.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #30  
Old Mon Jun 20, 2016, 09:30 AM
Data Data is offline
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Smile

Quote:
Originally Posted by Cheryl C View Post
Hi Data - For your viruses, have you tried any natural immune system boosters/antivirals like Olive Leaf Extract? I'm really impressed with it after it got rid of my shingles in 3 days about 3 months back. I took the liquid version with the highest level of oleuropein I could find.
Cheryl,
Thanks for the post and the PM. It must be nice to have a support system. I am envious. I admire you for your courage to make the decisions you have made.

As far as the "natural remedies", my background is in engineering (electrical and aeronautical) and have always relied on proven technology and I guess that has made me skeptical of things that haven't been rigorously proven - like natural remedies. I am sure there is stuff out there that helps some people but I like to stick to the medicines that have been through FDA approval and are prescribed by a doctor.

Best of luck to you!!!

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #31  
Old Mon Jun 20, 2016, 04:17 PM
PaulS PaulS is offline
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Hi Data - sorry you are still dealing with the viruses - are you symptomatic?

The news about the chimerism sounds bad for being in study - but good in that you are above 90% at this point in the transplant, no?

Hope you're feeling better.

Stay strong!
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #32  
Old Sun Aug 7, 2016, 04:55 PM
Data Data is offline
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Late Reply

I had the CD34+ mixed chimerism analysis test done on Day 90. It came back at 100% so I am off the study. I also have had two conventional chimerism tests done which were also 100%.

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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  #33  
Old Mon Aug 8, 2016, 08:22 AM
PaulS PaulS is offline
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Hi Data - glad to hear from you - I was worried. Glad you are 100% - The study wasn't to prevent relapse after you got to 100% - but only if you hadn't got there quite yet?? Have you asked about any maintenance treatment with AZA?
How are you feeling? Still dealing with viruses, any GVHD?
Best,
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #34  
Old Mon Aug 8, 2016, 05:57 PM
Data Data is offline
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Paul,
The only reason I wanted to be in the clinical trial was to get the more precise chimerism test. I have had two GVHD problems (skin and upper GI tract) and some viruses (CMV several times and BK). I am still just incredibly tired. I have not asked about AZA as the doc seems to think I am doing well.

Cheers

Data
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Prostate Cancer: Treated in early 2013 with HDR Brachytherapy. MDS-RCMD: Oct 2014. Biopsies: 46,XY,t(7;18)[2]: 46,XY,del(7)( q22)[3]: 45,XY,-7[6]: 45,XY,-7[10]: 45,XY,-7[13]. HSCT in April 2016.
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