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-   -   Refractory MDS (http://forums.marrowforums.org/showthread.php?t=2593)

sae36 Tue Dec 20, 2011 01:26 PM

Refractory MDS
 
My 71 year old father was just informed that Vidaza was no longer effective / working for him. They have diagnosed him as 'refractory'

Can anyone help with information regarding clinical investigative programs?

Birgitta-A Tue Dec 20, 2011 02:14 PM

After Vidaza
 
Hi sae36,
You know there are patients who try Dacogen after Vidaza. Then we have the immune modulating drugs Revlimid and Thalidomide. Some patients from this forum have tried Rigosertib (ON 01910 or Estybon).
http://ash.confex.com/ash/2011/webpr...aper43388.html

Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, received 142 units of packed red blood cells until Sept 2010. Started Thalidomide therapy June 2010 with good results

Willa Tue Dec 20, 2011 09:42 PM

Taking Dacogen
 
My husband (age 74) is taking Dacogen, but we have been told that he might become immune to it, thus it would no longer be effective. Not sure yet what we will try when or if this happens. Right now he is doing great, yet I am always looking for possiblities in other drugs.
His Dacogen is given, low dose, for 5 days, every six weeks.
God Bless ...

sae36 Mon Jan 23, 2012 03:35 PM

Very successful visit to physician
 
Quote:

Originally Posted by Birgitta-A (Post 21370)
Hi sae36,
You know there are patients who try Dacogen after Vidaza. Then we have the immune modulating drugs Revlimid and Thalidomide. Some patients from this forum have tried Rigosertib (ON 01910 or Estybon).
http://ash.confex.com/ash/2011/webpr...aper43388.html

Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, received 142 units of packed red blood cells until Sept 2010. Started Thalidomide therapy June 2010 with good results

Hi Birgitta -

After a bit more searching and web work we found the following:

http://mdsclinicaltrial.com/oncology...ite-locations/

There is a site near my father in San Francisco, where the physician has started him in the clinical trial for refractory patients.

Birgitta-A Tue Jan 24, 2012 01:30 PM

Rigosertib
 
Hi sae36,
Good that your father is getting Rigosertib! Hope he will have a positive response!
Kind regards
Birgitta-A

Jun Tue Feb 28, 2012 01:21 AM

Hi Birgitta-A,

According to the protocol of "Rigosertib", the trial is randomized and comparing to versus "best supportive care".
So, the chance of receiving "Rigosertib" is less than 100%, I think.
The regimen is appropriate ?

Regards,
Jun

Birgitta-A Tue Feb 28, 2012 05:34 AM

Rigosertib
 
Hi Jun,
Yes, this is a Phase III trial where the patients are randomized. Often 50% of the patients get the drug and 50% best supportive care. Sometimes the patients that didn't get the drug during the trial can get it after the trial. Ask your father's doctor when the trial is over if your father got the drug.
Kind regards
Birgitta-A

sae36 Mon Jun 11, 2012 08:28 PM

Update
 
My father just completed his 7th treatment with rigosertib - he has returned to work about 20 hours per week and has been feeling much better.

His physician gives his drug to him by a pump - which I worried about at first, but has been very good. My father is in great spirit and seems to have more energy.

:)

Birgitta-A Tue Jun 12, 2012 04:38 AM

Rigosertib
 
Congratulations to your father (and to you) :)!
Kind regards
Birgitta-A

Jun Tue Jun 12, 2012 10:20 PM

That's beaut!
 
That's nice to hear_!
Rigosertib has being prepared to initiate a Phase I clinical trial for the treatment of MDS in Japan, too.
We are exited to expect to have :excellent results!

cfai84 Wed Jun 20, 2012 01:21 PM

Can you please share how your father was treated and for how long? My brother is also diagnosed with the same thing, and now I'm suspected he has Grade 4 Guts GVHD. He's only 36 years old. The ATG, which is the 2nd treatment, didn't respond for a week and they have to start the 3rd treatment because he cannot eat or drink beverages except water. He has been like this for almost 4 weeks...

I'm having a meeting with the Doctor today in 6 hours... this is really scaring me out...

God Bless...


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